INTERVIEWS

BRANDI & TEAMMATES MAKING HISTORY IN ALBERTA, CANADA
Thank you to Brandi and all of her teammates, for all that you have done for the endometriosis community. This is a really inspirational read and represents teamwork at its absolute finest.

BP @ TEAM USA: Greetings to you from all of us on Team USA! We would love to learn more about you and your work. Would you mind to tell us a little about yourself!? For example, how long have you been battling endometriosis? Was there a particular experience or epiphany during your endo journey that influenced your decision to become an Endometriosis Advocate?

BRANDI, TEAM ALBERTA-CANADA: I first began having symptoms at the age of nine. I was diagnosed at the age of 30 and had excision surgery at the age of 32. The disease itself was very isolating and debilitating affecting every aspect of my personal and professional life. In February 2014 I learned of the first Worldwide EndoMarch and found there was nothing happening in Alberta. There were two Facebook support groups I helped to moderate, but there had never been in-person support or events. I was inspired by the Worldwide EnoMarch, but didn’t know much about it. I decided to share my passion for stand-up comedy and undertook to present the First Annual Alberta Endometriosis Awareness Comedy Show in Edmonton Alberta and thus was the beginning for Team Alberta. Ben Proulx, Sterling Scott, and New York’s Mike Dambra shared their gift of laughter as we live-streamed our event to more than 2,000 viewers from around the world.

We had a special presentation with Crystal Heart Awards for Alberta medical professionals making a positive difference for Endometriosis care and the City of Edmonton’s councilwoman, Bev Esslinger attended to present me with an Official Proclamation declaring March 2014 as Endometriosis Awareness Month. After receiving positive feedback and tremendous support from Albertans and the Canadian comedy community, I was very excited to officially become an international partner with the Worldwide EndoMarch in 2015 with my new partner, Sandra Engstrom. Sandra was an international partner with Team Scotland the first year, so it was exciting to have her lend experience and success helping to create change that has since influenced Parliament in Scotland to our Team.

BP @ TEAM USA: We are so incredibly grateful for all that you’ve done as the amazing leader for Canada’s Team Alberta! We were so proud of you as we watched your team secure both print and TV coverage, as well as recognition from the Edmonton mayor and so much more! Are there any special highlights from this season that you’re especially proud of and would like to share?

BRANDI: It was all very overwhelming. We had events all across the Province in the month of March. I would be driving four hours from one city at 2am to make it to television studios at 6am. I was so busy working and determining to ensure we achieved our goals to realize the impact we were making. It was when I was notified of the Alberta Legislative Assembly’s tables and returns document that I realized what we were doing here. The Honourable David Eggen, MLA delivered my Address and tabled the draft for recognition to the Assembly. This historical progress will impact generations and it is amazing to see what a small group of dedicated people can accomplish when they aspire to spread awareness with love.

BP @ TEAM USA: We were so inspired by you when we learned that you wanted to lead Team Alberta, especially knowing that trying to effect change like this is not easy and doesn’t happen overnight. So, what keeps you going? What inspires you to keep fighting for change?

BRANDI: I never would have learned about the treatment options and resources out there for patients with Endometriosis without the online community. I traveled four hours for excision surgery with Dr. Lianne Belland in 2014 and have had an incredible journey healing and learning to live a new normal life thanks to organizations out there like The Endometriosis Network Canada and Worldwide EndoMarch. I’ve had the opportunity to meet with thousands of patients, hundreds of medical professionals, and numerous politicians and doing so has opened my eyes to see how much of a need for awareness and recognition can significantly impact the quality of life for so many. I was recovering from my own surgery while organizing Team Alberta’s contribution to the 2015 Worldwide March. Meeting others with shared experiences that felt all the things I did over the years fighting this disease pushed me to move forward to ensure others may find the validation and healing I was able to find. Each individual has an incredible, but also heartbreaking story, and I’m inspired by the courage of those I have had the fortune to meet willing to share their own story. I have a strong support system with a family that has stood by me, friends that are always there, and the comedy community that lifts my spirits no matter how hard things may be. Not everybody has that kind of support, but all endo warriors need it. My mother is a strong incredible woman that never let me give up and stood at my side with my father and siblings long before I ever had a diagnosis. If Team Alberta can help one person feel less isolated and alone then we have done our part.

BP @ TEAM USA: We know (from experience now!) that there are countless obstacles one encounters when trying to organize awareness events like this. However, there are always amazing and unexpected wins, too. What was one unexpected good outcome that you and your team achieved this year, despite the odds?!

BRANDI: There were moments we weren’t sure that our EndoMarch rally was going to happen. We had a short deadline to get our permits, permissions, and the City of Edmonton and the Alberta Legislature really came through for us as the EndoMarch date closed in. We truly could not have had such a successful event without the public’s support and the Alberta community. I’ve always considered Alberta to be a very generous and wonderful place, but the Province truly outdid itself in every way helping us to present our first official EndoMarch rally at the Alberta Legislature. We knew there were going to be children, so Sean Baptiste lent his talents to help make the event more of a family-friendly event and we were surprised by special guest Cst. Dale McDonald opened our ceremonies with bagpipes to honour those that were too ill to be with us that day. Looking back, I get a little emotional thinking of the number of people who aren’t directly affected by Endometriosis, but helped make our special day happen despite all the challenges we had to overcome. People truly do care and want to care. They just didn’t know about Endometriosis and how it impacts our entire community.

BP @ TEAM USA: A lot of Country Captains/Partners told us that one of the most wonderful outcomes of the EndoMarch experiences these last two years has been having a chance to meet other endo sisters from around the world. What was that experience like for you? Do you have special new friendships that were forged?

BRANDI: On March 7, 2015 Team Alberta presented the First Annual Alberta Endometriosis Information Day. We wanted to begin small and work to build on it each year, so didn’t expect a huge outcome. Leaders, patients, family, supporters, and medical professionals from across Western Canada attended and a lot of strong relationships were forged on that day. We now have Team Manitoba offering resources and support in their Province, and see leaders working selflessly in our region to build a better tomorrow for people they have never met. I never knew about The Endometriosis Network Canada when I began organizing the First Annual Alberta Endometriosis Awareness Comedy Show. They are like family now and it feels very personal and special to share valuable TENC resources with new members of the Team Alberta community.

BP @ TEAM USA: Did you get a chance to work with medical professionals from your country again this year? What was that like? Do you think they listened to your concerns? Did they speak at your event? Do you think they’ll be on board for next year?

BRANDI: Engaging with medical professionals has been one of the most rewarding aspects of developing Team Alberta’s contribution to the Worldwide March. We had a top excision surgeon and a professional undergoing fellowship present at our Information Day, we were able to provide medical professionals, pharmacies, and multidisciplinary stakeholders with EndoMarch and TENC resources for patients in their practices. We had various special events where naturopathic and traditional medical professionals donated their time and resources to present various workshops and share their expertise specific to Endometriosis management and care based on modern concepts. I really have to thank people like Dr. Belland, Dr. Wagner, Dr. Terry Unger, Rose Yewchuk, and too many to list for their valuable contribution to our community. There are many sides to the story of Endometriosis care that impact the patient. The medical professionals also have many challenges they face that we must be willing to work with them as well. The voice of the medical professionals has been very powerful because each one we’ve met has made a genuine commitment to helping make change and create awareness despite their hectic schedules. The medical professionals are among our most valuable allies and we are excited to be gaining more and more interest and support from the medical community.

BP @ TEAM USA: On the tactical front, any tips that you’d like to share with this year’s new Country Partners? For example, how did you recruit volunteers to join your team? Did you have any luck getting in touch with journalists, elected or government officials? In general, what do you think was the most effective outreach strategy for just getting the word out? What was the least effective strategy?

BRANDI: We must truly understand that the majority of us involved are directly affected by Endometriosis. We are going to have good days and we are going to have hard days. We are going to have members that can contribute a lot and others that may be more limited, but also have a lot to offer that are equally valuable. It was important to let our team members know that if they couldn’t attend, or do something that they were not letting the team down. If we cannot understand in our own community then how can we hope for others to? Leadership on our team has always been about letting everyone shine in some way. Leadership isn’t telling people what they need to do, being in charge, or being in the spotlight. All of our members wrote letters to their elected government officials, each team member’s role was as valuable as the next. I requested for team members to attend with me for nationally televised interviews. I work in entertainment as a career, and may feel more comfortable speaking publicly, but it isn’t my time to shine in the spotlight. It is an opportunity to shine a light on the whole team that worked tremendously hard together.

BP @ TEAM USA: Any other highlights you’d like to share?

BRANDI: I’m very excited to kick off Team Alberta‘s 2016 campaign with a production in the world’s second largest fringe theatre festival. Fiddle Dee Dee Productions will be presenting The Fourth Wall at the Edmonton International Fringe Theatre Festival in August starring JP Fournier, Ken Valgardson, and myself. It isn’t just about Endometriosis. It is so much more! The show explores the need for breaking down walls to understand that we cannot be afraid to fail in life and Endometriosis is a powerful example of the need to look beyond our own walls to have compassion for the struggles others in our life even if it is invisible in front of us. Much of the dialogue addresses some of the painful things Endo warriors hear from well intending loved ones and those that may not believe how real their struggle truly is. I hope that anyone attending our show that has experienced chronic pain, or invisible illness, will be able to relate and we can further the meaning of Worldwide EndoMarch to Educate, Empower, & Effect

BP @ TEAM USA: Thank you so much for taking time out of your busy day to share your experiences!! Team USA salutes you for persevering and contributing so much to the endometriosis community, not only to those in your own country, but to those of us around the world who’ve been so inspired by your team’s hard work and sacrifices. We are honored to have you as a cherished partner in this important cause.

CANADA’S TEAM ALBERTA CONTACTS:
CONTACT: Brandi at endomarch.alberta@gmail.com
FACEBOOK: https://www.facebook.com/groups/739586339434806/?ref=br_tf
TWITTER: @EndoMarchAB


MALAYSIA’s COUNTRY CAPTAIN GETTING RESULTS
pic of the week malaysia team pic love love

Country Captain, Surita, is a founding member of the EndoMarch and has been working tirelessly for the cause for over two years. Here are excerpts from Surita’s interview with us:

BP @ TEAM USA: Greetings to you from all of us on Team USA! We would love to learn more about you and your work. Would you mind to tell us a little about yourself!? For example, how long have you been battling endometriosis? Was there a particular experience or epiphany during your endo journey that influenced your decision to become an Endometriosis Advocate?

My Story
SURITA:
Back in 1995-2001, I have no knowledge on Endometriosis. During those years, my periods were heavy and the pain was excruciating. I visited a few general practitioners and they kept giving me painkillers. They also told me that my pain was normal. At one point, I was heavily dependent on painkillers because I wanted to be like everyone else and not on sick leave all the time. It affected me tremendously. In 2001, my pain was unbearable. I fainted and vomited all the time. Now the pain was before period, during period and after period as well. I started having irritable bowel syndrome too. I couldn’t go to work and I was not productive at work. I was finally told to see a gynecologist by my aunt who was a nurse. After an ultrasound, the gynecologist informed me that I have Endometriosis and Endometriosis of the bowel. It was an unknown condition in Malaysia back then. She mentioned that my chances of conceiving would be slim. I had my first surgery in 2001, where she removed several Endometriosis cysts. I was given 6 injections for six months to put me on a menopausal stage. The medication caused me to have severe joint problems. I was weak all the time. My gynecologist indicated that I should get married and she wanted me to not delay in conceiving. I did manage to conceive naturally but I lost my baby when I was 7 months pregnant. After my loss, I went into depression. My pain and Endometriosis Cysts came back and I had to go for surgeries just to conceive. I managed to conceive twice but my pregnancies were not easy. I could not carry my babies full term. But I am truly blessed to have a daughter who is 11 years old and a son who is 4 years old.

My Epiphany
I believe the biggest problem would be that people in general perceive chronic period pain as normal pain. I had people around me who mocked me. They believe I am exaggerating my pain. Even doctors are skeptical of my pain. I had one doctor who laughed and told me that I had low tolerance of pain. They even wanted me to see a psychiatrist!

This is exactly what females go through all the time. Many of them were diagnosed quite late and by then the disease has progress to a point where they need major surgeries. I was so frustrated with this condition.

I volunteered to be an advocate on creating awareness here in Malaysia. I gathered a few individuals who are keen to create awareness on Endometriosis. Some of them have Endometriosis and some are supporters of females with Endometriosis. I also have 4 males in my group which I believe is a fantastic breakthrough in my country.  I am now a lot more concern about young females who are going through the same experience that I went through. They need guidance and emotional support.  In my early years, I was alone and I didn’t want this to be a lonely journey for them. 

BP @ TEAM USA: We are so incredibly grateful for all that you’ve done as a Country Captain for Team Malaysia for two years in a row! Not only were you part of the team that made history during the inaugural events in 2014, you’ve also been able to achieve even more this year! Are there any special highlights from these past two years that you’re especially proud of and would like to share?

SURITA: Since 2014, we have organized workshops, talks and events for females to interact and share their experiences.

1. Our first gathering was on the 13 March 2014. This was an informal discussion by Dr Premitha Damodaran with females and their caregivers at Starbucks.  

2. Our second event was on the 29 November 2014 at Universiti Tunku Abdul Rahman where we had 5 speakers who spoke about Fertility issues, pain management, nutrition, Traditional Chinese Medicine and yoga. The medical speakers are Dr Premitha, Dr Chong Kuoh Ren (Alpha Medical Centre), Dr Mahathir Mohamed (Timeless Clinic). We had the Deputy Minister of the Women, Family and Community Development Ministry to officiate our ceremony. 

3.Our third event was on the 28 March 2015. This event was aptly themed “MyEndosis Walk: Stand Up, Speak Up, Let’s Unite”. The month of March is Endometriosis Awareness month.  We had YB Senator Datin Paduka Chew Mei Fun, officiate our ceremony again. We invited Dr Helena Lim and Dr Natasha Nor from KL Fertility Centre. We also invited Dr Yap Moy Juan From FMGC as well. 

4.We also had an art exhibition at our  Gallery on the 25 March 2015 themed MyEndosis Walk: The Journey.  Patients and supporters came up with art pieces to express their Endometriosis pain and joy in finally conceiving. 

5. We were also on two radio shows(BFM and Trax FM), two talk shows, in two magazines and 4 newspapers in one year! We find this an impressive outcome since this is a taboo topic.

BP @ TEAM USA: We were so inspired by you when we learned that you were going to stay on board for another year, especially knowing that trying to effect change like this is not easy and doesn’t happen overnight. So, what keeps you going? What inspires you to keep fighting for change?

SURITA: In Malaysia, this is such an uncomfortable topic to talk about. I personlly feel this is a battle we should not give up since we are making progress. I believe our 13 committee members can make a difference and create awareness. We need to do this for all the females who are suffering silently in our society. They are facing physical and emotional pain. Some of them have problems with thier spouses because they cannot conceive.

BP @ TEAM USA: We know (from experience now!) that there are countless obstacles one encounters when trying to organize awareness events like this. However, there are always amazing and unexpected wins, too. What was one unexpected good outcome that you and your team achieved this year, despite the odds?!

SURITA: Initially we did not receive any fundings. After our first and second event, The Ministry of Women, Family and Community Developent did contribute financially. This is the breakthrough we need. Of course it was not an easy battle to convince them about our plight to create awareness on Endometriosis.

BP @ TEAM USA: A lot of Country Captains told us that one of the most wonderful outcomes of the EndoMarch experiences these last two years has been having a chance to meet other endo sisters from around the world. What was that experience like for you? Do you have special new friendships that were forged?

SURITA:
This is an amazing experience for many of us because we are able to meet other endo sisters and we began to form a strong bond. Our events on creating awareness provide a platform for individuals to discuss options on  treatments, medications and general issues. We are so happy to meet so many of us. This bond is truly special.

BP @ TEAM USA: Did you get a chance to work with medical professionals from your country again this year? What was that like? Do you think they listened to your concerns? Did they speak at your event? Do you think they’ll be on board for next year?

SURITA: We have good relationships with many doctors. Any many of them spoke at our events. We also made a breakthrough when the Obstetrical and Gynaecological Society of Malaysia (OGSM) is interested to endorse our next year’s event. OGSM is an independent, non-profit and non-governmental organisation affiliated to the International Federation of Gynaecology and Obstetrics (FIGO) and the Asia-Oceania Federation of Obstetrics and Gynaecology (AOFOG)

BP @ TEAM USA: On the tactical front, any tips that you’d like to share with this year’s new Country Partners? For example, how did you recruit volunteers to join your team? Did you have any luck getting in touch with journalists, elected or government officials? In general, what do you think was the most effective outreach strategy for just getting the word out? What was the least effective strategy?

SURITA: I would like to advice new country partners to never give up. There are times it can be frustrating. We do have people who laughed at us and implied that we are exagerating our pain and whining about our situation.

We do write and send emails to journalists and government officials but most of the time we have to knock on their doors to speak to them personally. This is the best method to convince people on our plight.

BP @ TEAM USA: Any other highlights you’d like to share?

SURITA: We are thankful to the global endomarch movement. We are now motivated because of this movement abroad. Worldwide Endomarch made it possible for us to push for change here in Malaysia.

BP @ TEAM USA: Thank you so much for taking time out of your busy day to share your experiences!! Team USA salutes you for persevering and contributing so much to the endometriosis community, not only to those in your own country, but to those of us around the world who’ve been so inspired by your team’s hard work and sacrifices. We are honored to have you as a cherished partner in this important cause.

FOR MORE INFORMATION ABOUT TEAM MALAYSIA
If you would like more information about the Team Malaysia, please do feel free to contact Surita or her teammates here:

TEAM MALAYSIA CONTACTS

Our contact details: Email us at endomarch.malaysia@gmail.com. or  ‘join’ our Facebook group MyEndosis.  Here is the link: https://www.facebook.com/groups/668335819890923/

And Our Facebook page is Endomarch Malaysia


GERMANY’s TRAILBLAZING COUNTRY CAPTAIN

endomarch 2016 germany alias endomarch 2016 germany alias logo tricked out with her info

‘Tilia’, shares her touching and powerful story of her journey from these past two years as Germany’s Country Captain. Excerpts were taken from her original post found here.

BP @ TEAM USA: Greetings to you from all of us on Team USA! We would love to learn more about you and your work. Would you mind to tell us a little about yourself!? For example, how long have you been battling endometriosis? Was there a particular experience or epiphany during your endo journey that influenced your decision to become an Endometriosis Advocate?

@ TEAM GERMANY – Tilia: 
Hello Team USA, dear Barbara, dedicated and affected persons, as well as all those interested. Thank you for your greetings, questions and your time! Since it is a very emotional issue for me, I will try to answer your questions as informative and hopefully as soft as possible. Beforehand I have to apologize, I am afraid my answers will be long – very long.´ I’m sorry! Some facts about me: to protect my family and the rest of what’s left of my privacy, I surf the Internet with my pen-name Tilia. I also had negative experiences when it comes to stalking. Thank you for your appreciation! I was born in Germany and I currently live in Leipzig. I am 40 years young and I love life, my family and especially my niece; she will turn 12 months this August! I also have several hobbies, e.g. my garden and needlework. I have a passion for crocheting. But at the moment, I spent most of my time raising awareness for endometriosis in our society.   Everyday anew it demands a great deal of me, how I came to be engaged in these concerns. Three years ago, I was diagnosed [with] endometriosis upon a diagnostic laparoscopy. I almost had my uterus removed back then. My former gynecologist and I were at our wit’s end. I was ruined, physically and psychically. Over the period of ten years, I discontinued contraceptives, which I had been taken for the past ten years. My menstruation was way too strong, I had miscarriages and eventually I did not manage to get pregnant any more. In addition to that, my health condition worsened. I developed a cellular immunodeficiency and an autoimmune disease. This involved several surgeries and less gentle treatments of conventional medicine over the course of three years. This made me feel discouraged and exhausted. Me and my family were worried sick and asked ourselves how I would manage to go on. I had been vegetating for many years, seclusive and apathetic;  I didn’t participate on other’s lives and wasn’t interested about my own life either. You can’t call that livability. In deference to nature and my family, I couldn’t go on like this.

Something had to happen…Eventually I made the decision to go to hospital and wanted to have a hysterectomy done despite my desire to have children! I was able to control my feelings in the preliminary talk until the doctor said: “Well, we are going to remove your uterus, after that you will be literally infertile!” All my pain that I had bottled up the last ten years burst out that moment and I cried helplessly, not able to say just a single word. I stammered and stuttered. The doctor was shocked and she went to gather more colleagues in order to sort everything out from scratch. At a rate of knots, they found out, that I never received any sort of diagnosis. I had to get one as soon as possible. Shortly thereafter, I had the laparoscopy. Through the extracted tissue sample, I was finally diagnosed endometriosis. Few hours after the surgery, the doctor had already suspected this. This was in January, 2012. Just the next day I went back home. They told me to consult my gynecologist and show her my medical report. This was hard for me. After all I had been through, this was the last place I wanted to go. I went there and she apologized for not having considered this possibility. Anyway, there would not be too many women suffering from endometriosis.

She told me that endometriosis was very rare, could be treated really well with contraceptives and anyway, I was completely healed since I had a laparoscopy done. There were so many contradictions! She didn’t want to answer my questions properly and she was not able to tell me what endometriosis is. I had read the medical report myself. It stated that I had to have a complete inner restoration, since they only extracted tissue samples. I had to go to a special endometriosis clinic! But she just gave me another contraceptive and said,  “Well, see you in half a year!” I went home, aghast and confused, and took a look at my scars and stitches. She should have removed the stitches – which she hadn’t done obviously – so I went back to the hospital. You can tell that they were everything but happy to hear my story. They gave me the address of an endometriosis clinic, but they were not sure whether they were still working in this field of expertise.

I had enough of it. I went home and researched on the Internet for myself! I typed in the word, ‘endometriosis’, and Googled it for the first time. The next days, I soaked it all in, every single information I could get, hoping to find anything useful. No chance! I only cried and was depressive because of what affected people had to go through. They just brought me closer to despair, even though I wanted to leave that behind! There are so few web pages providing specific knowledge and everybody says something else.  After that I went to the library. I noticed after having read three pages: I should have studied medicine… How long would it take to finally understand one book and my own illness? Not until later I remembered our discussion and encounter groups and I started to Google for endometriosis encounter groups. I was sure: they had to know what endometriosis is! I was unlucky. There was no such group in my city and we don’t have many after all over Germany.  Summer passed and I decided to found my own endometriosis group in August 2012. In the meantime I visited three endometriosis clinics (all over the country, hours from my home, once I had to wait for 6 hours). I only made negative experiences and everybody told me something else. That didn’t help me either.

Eventually it was fall and I founded my own endometriosis encounter group in Leipzig, my hometown. I learned that other affected women were also interested in a group and this is why I founded another Group in Halle (Saale) and Augsburg.
And this is how I founded my endometriosis network which will hopefully grow further! Concurrently, I organize many endometriosis events throughout Germany the whole year. I also have many virtual platforms I supervise; affected people are to swap ideas there. We want to organize regional meeting there!  But let’s get back to the “EndoMarch”. Upon my researches, I eventually found out about the “EndoMarch”, formerly the MillionWomenMarch, on Facebook, in 2013. Back then it was nothing more than just a small group! I joined this group, contacted the admin and gathered more background information. And this was really hard for me, since I don’t speak English and Google Translate isn’t really a trustworthy source. By the way, this has not changed until today. Every then and now I engage a translator which entails costs. Or I just ask my sister; she has lived in London for several years and knows so much more about languages that I do! Everybody who tried Google translate knows what I am talking about. It gives you really strange results. It takes a lot of fantasy to understand it.

Whatever, I contacted the admin, but that’s it. Few days later, I suddenly received a message: Hey there, did you know, that you are Germany’s Country Captain and and and? I was like nooo? I just asked what this was all about?! I was longing for an answer eagerly and translated it. I learned about the extent and responsibility. I was shocked and felt really bad. Worse from day to day. I wondered: what the hell did I write? How could this have happened? How should I handle this on my own? I am just affected, nothing more! What would be expected from me? Who do they think I am?

After a few days I calmed down and took responsibility! So this is what I knew: nothing more than a date: Thursday, March 13, 2014 I was on my own, was to raise awareness in all over Germany and participate in our worldwide endo campaign. Shout out „Here I am!“ I am your contact person. I am going to organize it my way. I really was on tenterhooks… I knew, that nobody was aware of the illness endometriosis or the “EndoMarch” since it was something completely new! And Germany is sick of demonstrations. We do not have the rights to go on the street. And it is a huge problem for affected people, since some are just feeling too bad to go out! We do not have any institutions in Germany that would avow for the rights of people suffering from endometriosis! Meaning I had lots of problems of which some are present until today…In hindsight I think about it with a smile on my face. In Germany we would say „this pair of shoes“. I put this pair of shoes on with a smile on my face and I have come a long way wearing them! Not only for myself, but for worldwide 200 million people suffering for endometriosis. I want to raise awareness!
Pictured above: You can see the hard work paid off! Here are images from Tilia’s Berlin Event from the first ever global march for endometriosis in Germany on March 13, 2014!

A last word to all doubters:

  • Come on, nobody needs that.
  • It is too expensive.
  • It is just too far away.
  • Well, my Granny hast birthday just that day.
  • I do not have anybody who would look after my cat.
  • Why not just have my own blog and tell people what I think about it?
  • I do not like yellow, can I take another color?

I want to tell you something! If you are not willing to fight for yourself, then fight for following generations! Fight for all those that will suffer from endometriosis in the future! Fight for your children, your future daughter-in-law… It’s them to whom you will have to justify yourself: “Were you a part of it back then?”  When you had the chance to change something and raise awareness for endometriosis worldwide! Because those who organize the “EndoMarch” are affected people just like you and me!!!

BP @ TEAM USA: We are so incredibly grateful for all that you’ve done as a Country Captain for Team Germany for two years in a row! Not only were you part of the team that made history during the inaugural events in 2014, you’ve also been able to achieve even more with your 2nd Annual EndoMarch! Are there any special highlights from these past two years that you’re especially proud of and would like to share?

@ TEAM GERMAN/- Tilia: Every time I see that some come from really far, just to attend, I am really stunned. In 2013 I thought that it should be a huge EndoMarch. In 2014 I wanted it to be hugest EndoMarch one has ever seen! There are enough affected people. That’s why I chose the first EndoMarch 2014 to be in Berlin! But it turned out to be worse than expected. Germans tend to talk and not to act! There are of course many people who assure to help me, but when it comes down to acting, they normally pull back. They pull back, because it means loads of additional work and renunciation; it is almost impossible to have a private life while organizing. In the end there were not half as many participants as expected. We were doing the best of it and spent a few nice hours together on a public plaza; in the end we all had our own little flashmob. Until today I think back with a smile on my face. I was feeling very bad that day, but this beautiful moment gave me the strength to keep my head held up high. I realized that this moment is worth fighting for and swallowing disappointments.  We have to go on…In 2014, I decided to organize the next EndoMarch in Leipzig, my hometown. Leipzig is also quite huge. In contrast to Berlin, I know many affected women who live here and have personal contacts. But even here everything turned out to be completely different… I had made contact with the administration of the gynecologist department in St. Elizabeth Hospital Leipzig; they were interested in what I was doing. They provided us their convention hall. Together, we developed a concept, invited endometriosis specialists. We asked them to make a lecture. The clinic even provided us with a buffet. We dealt with the public relations work together. Finally we had more applications. Even if only half of them really attended us in the end, nevertheless, there were so many attendants, even from all over Germany. They had traveled such a long way just to listen to what we had to say! The next day I even organized a small city trip. Altogether, I did not only have a nice time but also a pleasant cooperation with the gynecologist department in St. Elizabeth Hospital Leipzig. But let’s get back to what I actually wanted to tell you! It is not about the size, but about making this worldwide campaign as low-threshold as possible.  In order to make it possible for others to be attendant, not only in cities, but also in rural areas!: Where nobody has ever heard about endometriosis.

Where we need to raise awareness, e.g.:

  1. What is endometriosis?
  2. How can we handle this illness?
  3. What support can be provided via encounter groups?
  4. How can I contact others and be involved?
  5. How does a good doctor – patient conversation work?
  6. Who supports us when it comes to applying for rehabilitation or disabled person’s pass?
  • We need to rise awareness for specialist doctors!
  • Shelters for people suffering from endometriosis and exchange of experience and knowledge!

Even if it means, that there won’t be many attendants. It is worth it!  It is worth so much more than organizing it in a large city where nobody would come. Everybody would just pretend to join but cancel it last-minute. Full of hope, I look at the Country Captains of other countries. Where there are so much more women speak up for our goals, e.g.:

  • Research
  • Professional competence
  • early diagnosis and simplified testing methods
  • Individual therapy concepts and aftercare
  • unbureaucratic access to ambulant and stationary rehab methods
  • Increased clarification in clinics, medical offices and in public
  • Assistance of nationwide and comprehensive shelters for people suffering from endometriosis
  • Assistance of therapies for ovulation synchronization treatment
  • Assistance of ambulant therapies and better aftercare after surgeries
  • Assistance for reintegration into work and profession

We need to declare our solidarity altogether! I admire you, every single person who is engaged or just attends our EndoMarch. I am proud to fight alongside you.

One day, people will say “endometriosis was underestimated this whole time,” instead of “endometriosis is underestimated.”

But we still have a long way to go. The next goal is our third EndoMarch which will also be organized by me. I am already glad about every single person that will join us in the end! And I am glad about our endometriosis specialists who are going to hold a speech as well.

BP @ TEAM USA: We were so inspired by you when we learned that you were going to stay on board for another year, especially knowing that trying to effect change like this is not easy and doesn’t happen overnight. So, what keeps you going? What inspires you to keep fighting for change?

@ TEAM GERMANY – Tilia: Out of respect for our marvelous and unique endometriosis campaign: Because I believe in what we are doing. We need changes for affected people I have the deep desire that following generations will have early diagnoses. They should enjoy a better treatment than we are having right now! I value the acquaintances I was able to make with all of the Country Captains and team members, among them especially Barbara I admire all the voluntary commitment and hard work, I share the pain with every single fate, I went through all of this too and yet I love it. I have got a family that reinforces me in every decision I take. Without them, I would have starved to death or ended my life on several occasions. I would have missed out on all these beautiful moments! I am not only looking at all those colorful pictures from a distance, hell no! I know the person that is organizing all of this! I finally understand the abundance of diversity and I notice the growing interest in what we are doing. I can be a part of the greater whole. I live, laugh and cry for the campaign!

BP @ TEAM USA: We know (from experience now!) that there are countless obstacles one encounters when trying to organize awareness events like this. However, there are always amazing and unexpected wins, too. What was one unexpected good outcome that you and your team achieved this year, despite the odds?!

@ TEAM GERMANY – Tilia: In 2015, another federal state seized on the idea of our campaign. For this reason, the EndoMarch took place in two out of sixteen federal states in Germany. Who knows, maybe there will be more states campaigning in 2016? With each year full of experiences passing, I lose the fear of being put on the spot or not being able to organize it any more. I want to ensure the best contribution Germany has to offer! Especially in the beginnings I was facing huge refusal and rejection which made it really hard for me.

They even expect me to be polite. I was tempted to say: “Who do you think you are? Have you ever done something for affected women?” All those weary bloggers contributing their dangerous sciolism, claiming that their illness is “much worse than yours, than everyone’s!” You have your own little web page, massage your ego and make profit of it. You are no institution, you do not crusade for women’s rights. You abuse your informative power to make a living!

I want to tell you something: You are the ones to show me, that I am on the right track, heading towards change. Despite your longstanding existence, there still are many women suffering from the devastating consequences of endometriosis! Tick tock, their time is running out…

Neither am I a full-time specialist nor an event manager or endometriosis specialist; I do not have support money and I do not have the strength to realize everything I want to on my own. I also am affected by endometriosis as you know and as I told you beforehand, I am doing so much more than the others, so respect me for what I am doing and see the big picture!

BP @ TEAM USA: A lot of Country Captains told us that one of the most wonderful outcomes of the EndoMarch experiences these last two years has been having a chance to meet other endo sisters from around the world. What was that experience like for you? Do you have special new friendships that were forged?

@ TEAM GERMANY – Tilia: Oh yes, all of a sudden, my contacts cover the whole globe; virtually of course. For me, however, those contacts are no true friendships. I think it is unrealistic to transfer virtual friendships to real life. Yet, I value the networking and I enjoy the confidence you have placed in me. You have let me be a part of diverse snapshots of your life. I feel sympathetic to many of you; I can see things from your perspective and I know that nothing is self-evident, most of us had to work hard for what they have now. Despite your bitter fate, you still have motivating and loving words to spare for all of those, who gave less than you did. You can clearly see: “Persons who don’t own anything give everything away, those who own everything just hoard it!”

We are so much more than just a part of our community of fate, like being endosisters, endofighters or the rest of our silent society. We are cooperating with alive human beings – whether it is virtual or in person – and humanity! As I told you before, I kind of shut myself away for several years in real life. For this reason, it wasn’t easy for me to take the first step and approach others. I first developed this ability upon found my endometriosis encounter groups. This is where I carefully make friends, as well as on events. Bur basically, I have to learn how to share the same confidence you had put in me.

Several years of endometriosis and pain have changed every single somatic cell. My unfulfilled desire to have children was an unspeakable sorrow. By now I am [this many] years old and I fairly accept it. Nevertheless, can I expect others to accept me – as full of pains as I am? This is why I prefer to keep my distance to anything and everybody.

BP @ TEAM USA:
 Did you get a chance to work with medical professionals from your country again this year? What was that like? Do you think they listened to your concerns? Did they speak at your event? Do you think they’ll be on board for next year?

@ TEAM GERMANY – Tilia: By now, the negotiations for the upcoming EndoMarch prove to be positive; I guess that the clinic will again join in. Anyway, should they back out last-minute, I still have my plan B thanks to previous experiences. I WILL set up something, somewhere…

We have to do the EndoMarch on March 19th instead of March 26th, though, since this date is during our Easter holidays.  In addition, I want to mention that the medical faculty is way higher encouraged that all the affected women. There are only few to confess to suffer from endometriosis in public and fight for raising awareness. That’s a substantial difference and this is why the efforts to throw light on our matters are one sided. Several organizations and the pharmaceutical industry just want to make a fortune of medical treatments for endometriosis instead of enlightening us! The desires of people suffering from endometriosis fall by the wayside.

  • What do they desire?
  • What do they expect?
  • Appreciation and the chance for self-help!

Now I have to manage the balancing act between an informative event and technically experienced speeches. First of all, the interest of affected people and the medical faculty has to be defined. Then common ground has to be found! Everything else has to be optimal as well: good infrastructure, maximum cost efficiency for everybody! In the end, this means that the EndoMarch can only take place in places where there are experts and volunteers.

BP @ TEAM USA: On the tactical front, any tips that you’d like to share with this year’s new Country Partners? For example, how did you recruit volunteers to join your team? Did you have any luck getting in touch with journalists, elected or government officials? In general, what do you think was the most effective outreach strategy for just getting the word out? What was the least effective strategy?

@ TEAM GERMANY – Tilia: 
I only want to give you a few tips: Completely commit yourself to the EndoMarch. No matter what you do, everything is going to turn out well. The only thing that matters is that you act! Please contact and we will send you all the necessary information! With great pleasure, we – the whole team of the Country Campaign – will help you in word and deed! Please bear in mind, that an answer can take a while. We are offering none but informative assistance, it is up to you to act! Look at it like this: the organisation of the program of our campaigns is just as versatile like the diversity of our countries! We’ve got everything, beginning with a cozy coffee clatsch, ending with a professional information platform.  As I told you beforehand, it can be really hard to find volunteers. You cannot persuade others, they have to take action themselves. However, I can give you a piece of advice, helping makes you feel so much better. You just have to give it a try. There is no need to wait for years until you can benefit from all the positive experiences you will have made. Well, we will see what the next few years will bring! Anyway, I do not have many business connections amongst journalists or politicians. I have contact to some though, and I can assure you that it took me a lot of effort to establish it!!! This is why my public relations work is limited to one or two sentences about date and place of the next EndoMarch in smaller newspapers. As you may also know, Germany has a policy, for the population, *not* specifically for medical treatment of women. It is really hard to gain acceptance for me. I feel like Germany is too focused on… [other isues]; we should focus more on our own concerns!… Our public work is to allocate small and colorful flyers, explaining what endometriosis is and providing information about our campaign. We are living in a fast-paced society; therefore we try to provide the information on the spot. It is easier to elucidate somebody face-to-face than by mail or under separate cover. This is why I also organize several smaller meetings, where I also introduce our campaign.

Least effective is to ask others for financial aid. I am consciously disassociating myself from any financial means or pharmaceutical aid in order to stay neutral and independent. The EndoMarch, however, is no cozy teamwork project. Otherwise we would have been able to claim benefits from our local health care system. Everything is expensive nowadays: Talking about benefits and financial aid, meaning donations: our pleadings are only addressed to those who are already well informed about endometriosis. Since the EndoMarch hasn’t reached the intended level of awareness yet, it is hard to reach other people. In the end, this means that we do not have sufficient means. This has to be changed! I am waiting for the moment when I can say: “time has come to set up a benefit performance!”

BP @ TEAM USA: Any other highlights you’d like to share?

@ TEAM GERMANY – Tilia: For additional information and impression on the EndoMarch please click here (…). I want to raise your awareness for a positive attitude and the importance of self help.  Encounter groups are coalitions of like-minded persons on a regional basis. More precisely, I am talking about endometriosis encounter groups. Affected people are at eye level with each other. It is not only about how to be able to deal with endometriosis: Those groups form a community; members feel secure. Self help contributes to the fact that everybody out there can feel secure.  Our insight and knowledge should help every woman worldwide! And I can say that I, personally, feel safer now than I did before I started to attend several encounter groups. I found new possibilities how to receive emotional relief and where to talk to like-minded persons. This is something you can benefit from too! Several encounter groups in your area are awaiting you. Be brave, you can accomplish whatever you strive for – better together than alone. The time has come to act!!!

BP @ TEAM USA: Thank you so much for taking time out of your busy day to share your experiences!! Team USA salutes you for persevering and contributing so much to the endometriosis community, not only to those in your own country, but to those of us around the world who’ve been so inspired by your team’s hard work and sacrifices. We are honored to have you as a cherished partner in this important cause.

@ TEAM GERMANY – Tilia: You are doing great work and I am proud to fight at your side. I want to thank you from the depth of my heart, thank you for everything you have done for me and for everything you have gone through with me. Thank you for supporting me. And last but not least a special thanks to my family. Thank you! I wish for a foundation of trust for every single on of us in order to have an uncomplicated life with endometriosis. I wish for a development towards happiness and health-related quality of life. With best regards, Tilia

TEAM GERMANY – TILIA CONTACT
Tilia at kontakt@netzwerk-endometriose.de
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TEAM GERMANY – SCHWEINFURT CHAPTER PRECINCT MANAGER TAKING ACTION…
endomarch 2015 germany katja on stage awesome pic

From the front lines of Germany’s Schweinfurt Chapter, we would like to introduce you to Katja Uttinger, who is also an amazing advocate, Endo Sister, and EndoMarch Precinct Manager for the Schweinfurt Chapter.  Here are excerpts from her recent interview with us!

ENDOMARCH STAFF: Greetings to you from all of us on Team USA! We would love to learn more about you and your work. Would you mind to tell us a little about yourself!? For example, how long have you been battling endometriosis? Was there a particular experience or epiphany during your endo journey that influenced your decision to become an Endometriosis Advocate?

KU @ TEAM GERMANY- SCHWEINFURT BRANCH: My name is Katja Uttinger, I am 48 years old and the Precinct Manager of Germany/Bavaria. I was born and raised in Germany. I used to work as a paramedic and medical assistance till 2008. Endometriosis did cost me 4 jobs, since I got fired every time I needed an operation. Then I started working [in] automobile industries, working shifts in productions, where I still work. So far I have had 13 operations and hoping I will not have another one. I do have a beautiful, smart 23-year-old daughter; she is the light of my live! Couldn’t have done it without her! I did have problems with my period since the beginning of my womanhood…about age 13! Never did I think, I did have a disease, nor did my surrounding or family or doctors. I did see my first gynecologist at age 15 because of heavy periods. He would prescribe BC (not even having intercourse yet) to help with the heavy bleeding, which seemed to work for years. After becoming an adult, I would find myself in his office over and over again, because of painful sex. I do not want to write about all the answers he gave me. They were disturbing and cruel. I ended up, thinking I am just not NORMAL! I started looking for answers online, as soon as I got diagnosed with Endometriosis – only to find out, there weren’t any answers! Not in Germany. I did get diagnosed in 2000 during an appendectomy. The surgeon told me I had endo, but it is nothing to worry about, [to] see a gynecologist and you will be okay. Which I wasn’t! From there on, I decided to become a voice for women in Germany, but couldn’t find partners to work with, until I became a member of the Endometriosis Foundation of Germany. In 2013 I read about the EndoMarch and decided to participate in it.

ENDOMARCH STAFF: We are so incredibly grateful for all that you’ve done as a Country Partner for Team Germany for two years in a row! Not only were you part of the team that made history during the inaugural events in 2014, you’ve also been able to achieve even more this year! Are there any special highlights from these past two years that you’re especially proud of and would like to share?

KU: I am very proud of all my Endo-Sisters who supported me! Also one of the highlights was, my “coming out” in the newspaper. I felt released and happy, that everybody knows now, what is “wrong” with me. And all the phone calls from women, or mails, asking about endometriosis, helping out in finding experts to help them! Also EndoMarch 2015 in Schweinfurt was so awesome, I think we had the best speaker – Prof. Dr. Renner from Erlangen – he taught us a lot of things I didn’t know!

ENDOMARCH STAFF: We were so inspired by you when we learned that you were going to stay on board for another year, especially knowing that trying to effect change like this is not easy and doesn’t happen overnight. So, what keeps you going? What inspires you to keep fighting for change?

KU: What really keeps me going is actually right now, the experience I keep having with the local doctors! Being invited to a professional event with guest speakers experts and not attending is driving me insane..lol…I want to get the Ob/Gyns in my area to pay attention to Endometriosis and the women suffering from it! Get to know the symptoms, the treatments and to send them over to specialist to take care of us! We are coming to them to seek help, not pity! We are not sure yet, where we will hold our next event. Could be in Würzburg, where there are a lot of medical universities plus med students, or in Schweinfurt again, maybe even in both towns! Plans are on the way…

ENDOMARCH STAFF: We know (from experience now!) that there are countless obstacles one encounters when trying to organize awareness events like this. However, there are always amazing and unexpected wins, too. What was one unexpected good outcome that you and your team achieved this year, despite the odds?!

KU: Best outcome was actually the recognition of endometriosis in my town and people asking for advice about it: My next door neighbor would finally get operated and diagnosed with endo after years of pain. Girls asking about it; this makes me really proud and gives me the feeling of achieving something. I am also very happy about meeting the right people at the City Hall in Schweinfurt; without them, this could have never been as successful as it turned out. Plus meeting all my awesome endosisters in person for the first time; we developed a great friendship!

ENDOMARCH STAFF: A lot of Country Captains told us that one of the most wonderful outcomes of the EndoMarch experiences these last two years has been having a chance to meet other endo sisters from around the world. What was that experience like for you? Do you have special new friendships that were forged?

KU: Yes definitely; I met so many Endosisters around the world via Facebook and have a lot of support from them! I love them all and some of us are planning to meet one day, just like my best Endosister Eylin Perez from Peru! She is my little sister and I love her dearly.

ENDOMARCH STAFF: Did you get a chance to work with medical professionals from your country again this year? What was that like? Do you think they listened to your concerns? Did they speak at your event? Do you think they’ll be on board for next year?

KU: Well, as I mentioned earlier, I was very lucky to get my specialist Prof. Dr. Renner from Erlangen to speak at my event. He is just awesome and works hard on recognition of endometriosis in Germany. Also my other gynecologist, Dr. Gericke, who did my treatment with Chinese medicine, which has been very helpful with pain! I am still so glad they joined us and did spent their Saturday afternoon for free to support this cause! Not sure yet which doctors we will find for next year, but I have a few in mind! Maybe even Prof. Dr. Renner, but I haven’t asked him yet.

ENDOMARCH STAFF: On the tactical front, any tips that you’d like to share with this year’s new Country Partners? For example, how did you recruit volunteers to join your team? Did you have any luck getting in touch with journalists, elected or government officials? In general, what do you think was the most effective outreach strategy for just getting the word out? What was the least effective strategy?

KU: I did get to meet Diana Fuchs from our local newspaper which was one of my best moments this year! She was very interested and wrote a great article about me; haven’t had the time to do more due to my full-time job. I have talked to on elected government official, but didn’t get any answers yet; still working on that one. I would think that going public with my own personal story was the best I could do and effective. The least effective is to ask for help and having to ask over and over again, even just friends who just don’t want to commit. Don’t waste time asking [again] if their answer isn’t yes the first time! Find somebody else. A big help is also using social media like Facebook. I do not use Twitter or anything else, but Facebook really did a great job finding volunteers!

ENDOMARCH STAFF: Any other highlights you’d like to share?

KU: The amazing donations I got during my planning for printing flyers for example. Even my daughter gave me a cup for endo support filled with money for Christmas. She has been a big supporter! Also my best friend, and oh my God all the Endosisters attending; I was overwhelmed with all the gifts and flowers they brought! Amazing moment, they donated so much, because they want to do this again. J

ENDOMARCH STAFF: Thank you so much for taking time out of your busy day to share your experiences!! Team USA salutes you for persevering and contributing so much to the endometriosis community, not only to those in your own country, but to those of us around the world who’ve been so inspired by your team’s hard work and sacrifices. We are honored to have you as a cherished partner in this important cause.

TEAM GERMANY – SCHWEINFURT CHAPTER
If you would like more information about the Team Germany – Schweinfurt chapter, please do feel free to contact Katja or her teammates here:

Contact Katja at kuttinger@web.de
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COUNTRY CAPTAIN OF TEAM ITALY SHARES INSIGHTS
Thank you to Alina, Country Captain of Italy, who, for 2 years in a row, has organized some of the most inspiring EndoMarch events we’ve seen! We’ve relied on Google Translate here, so there may be parts that didn’t translate so well. We’ve included Alina’s answers in the original Italian for reference.

endomarch 2015 italy wow crowd shot on stairs

TEAM USA: Greetings to you from all of us on Team USA! We would love to learn more about you and your work. Would you mind to tell us a little about yourself!? For example, how long have you been battling endometriosis? Was there a particular experience or epiphany during your endo journey that influenced your decision to become an Endometriosis Advocate?

AM: I am Alina, I am 44 years old and have been found to have endometriosis in 2001 when I made my first speech but already a bit ‘of years I had problems. In 2004 I had a total hysterectomy but unfortunately I had a remnant ovarian and therefore are still under hormones to stop the disease. I did not want more to do with this disease but over the years and with the help of social I decided I had to do everything possible in order not to pass to the younger generation what I had tried it.

AM: Sono Alina, ho 44 anni e ho scoperto di avere l’endometriosi nel 2001 quando ho fatto il mio primo intervento ma già da un po’ di anni avevo problemi. Nel 2004 ho fatto un’isterectomia totale ma purtroppo ho avuto un remnant ovarico e quindi sono ancora sotto ormoni per fermare la malattia. All’inizio non volevo più saperne di questa malattia ma col passare degli anni e con l’aiuto dei social ho deciso che dovevo fare tutto il possibile per non far passare alle nuove generazioni quello che avevo provato io.

TEAM USA: We are so incredibly grateful for all that you’ve done as a Country Captain for Team Italy for two years in a row! Not only were you part of the team that made history during the inaugural events in 2014, you’ve also been able to achieve even more this year! Are there any special highlights from these past two years that you’re especially proud of and would like to share?

AM: Although we were in a few for the combination of a weekly day, the first year has been exciting for the novelty; personally I was afraid because I did move a lot of people to an event of which I was not sure how he was going. We marched to the Ministry of Health. This year the organization is the first game with a mesh size equal to all and are born of good ideas for the flash mob. Then the location of the steps of the Spanish Steps in Piazza di Spagna is very beautiful and, even today, relate to the video in which the yellow shirts come in square and take possession of the steps, it moves me a lot. Masks yellow Deputies was then a passage very touching. They were remembered two girls died, a complication during surgery for endometriosis and a road accident but who had participated in the first march sick because of endometriosis.

AM: Anche se eravamo in pochi per la concomitanza di un giorno settimanale, il primo anno è stato emozionante per la novità; personalmente avevo paura perchè facevo spostare molte persone per un evento di cui non sapevo bene come sarebbe riuscito. Abbiamo marciato fino al Ministero della Salute. Quest’anno l’organizzazione è partita prima con le maglie uguali per tutte e sono nate delle belle idee per i flash mob. Poi la location della scalinata di Trinità dei Monti in Piazza di Spagna è molto bella e, anche oggi, riguardare il video in cui le magliette gialle entrano in piazza e prendono possesso della scalinata, mi emoziona molto. Le maschere gialle a Montecitorio è stato poi un passaggio molto toccante. Sono state ricordate anche due ragazze decedute, una durante un intervento per complicanza da endometriosi e una per incidente stradale ma che aveva partecipato alla prima marcia perchè malata di endometriosi.

TEAM USA: We were so inspired by you when we learned that you were going to stay on board for another year, especially knowing that trying to effect change like this is not easy and doesn’t happen overnight. So, what keeps you going? What inspires you to keep fighting for change?

AM: What inspires us is the recognition of the disease by the institutions. Even today women suffering from endometriosis are not protected both at work, coming to lose work to the continued absences from work, and socially. Diagnostic tests are paid and even some cures. We would like the exemption as with other diseases. In addition we do to inform and raise awareness of the disease for those who see that day. There is little knowledge of the disease in Italy in fact pass many years to diagnose.

AM: Quello che ci ispira è il riconoscimento della malattia da parte delle istituzioni. Ancora oggi le donne malate di endometriosi non sono tutelate sia sul piano lavorativo, arrivando a perdere lavoro per le continue assenze dal lavoro, che sociale. Gli esami diagnostici vengono pagati e anche alcune cure. Vorremmo l’esenzione come accade per altre patologie. In più lo facciamo per informare e far conoscere la malattia per chi ci vede quel giorno. C’è poca conoscenza in Italia su questa malattia infatti per diagnosticarla passano tantissimi anni.

TEAM USA: We know (from experience now!) that there are countless obstacles one encounters when trying to organize awareness events like this. However, there are always amazing and unexpected wins, too. What was one unexpected good outcome that you and your team achieved this year, despite the odds?!

AM: The day of the march had sent a letter to Sottosegrerio health to have a meeting and we had not been answered. Then a member of Team Italy is risucire to have a meeting. We promised that we will meet again in September to the Ministry to investigate the things we asked. However in both the Italian Team that charities are struggling every day and make progress for the social recognition of the disease. Perhaps we should all get together and do group, surely the union is strength and we would be better heard and considered.

AM: Il giorno della marcia avevamo mandato una lettera al Sottosegrerio alla salute per avere un incontro e non avevamo avuto risposta. Poi un membro del Team Italy è risucito ad avere un’incontro. Ci ha promesso che a settembre ci rivedremo al Ministero per approfondire le cose che abbiamo chiesto. Comunque in Italia sia il Team che le associazioni ogni giorno lottano e fanno passi avanti per il riconoscimento sociale della malattia. Forse bisognerebbe mettersi tutte insieme e fare gruppo, sicuramente l’unione fa la forza e verremmo maggiormente ascoltate e considerate.

TEAM USA: A lot of Country Captains told us that one of the most wonderful outcomes of the EndoMarch experiences these last two years has been having a chance to meet other endo sisters from around the world. What was that experience like for you? Do you have special new friendships that were forged?

AM: Personally I have not [but] I linked to some other girls who are part of the team of other nations. This is a very nice thing. The first year we helped with logos and other things of graphics. Then maybe for common passions you join more and despite the language difference (now with translators is no longer a problem) is pursuing a friendship.

AM: Personalmente non ho incontrato nessuna endosorella, ma mi sono legata ad alcune altre ragazze che fanno parte del Team di altre nazioni. Questa è una cosa molto bella. Il primo anno ci siamo aiutate con i loghi e altre cose di grafica. Poi magari per passioni comuni ci si unisce di più e nonostante la differenza di lingua (che ora con i traduttori non è più un problema) si porta avanti un’amicizia.

TEAM USA: Did you get a chance to work with medical professionals from your country again this year? What was that like? Do you think they listened to your concerns? Did they speak at your event? Do you think they’ll be on board for next year?

AM: Team Italy this year has been working with doctors but some of them have participated in the march and it made us very happy. Doctors should be the first to take to the road with us. I hope that next year there will be a lot more because being on our side means to show the state that they too are outraged at our situation and first of all, to show it to their patients. There were meetings and stages from which to speak to the opposite of last year. The doctors meet to meetings every week. We decided that the day for endometriosis is women, their families and friends. That day we see that we do and we leave the silence.

AM: Il Team Italy quest’anno non ha lavorato con medici ma alcuni di essi hanno partecipato alla marcia e ciò ci ha fatto molto piacere. I medici dovrebbero essere i primi a scendere in strada con noi. Mi auguro che per il prossimo anno ce ne saranno molto di più perchè essere al nostro fianco vuol dire far vedere allo Stato che anche loro sono indignati per la nostra situazione e prima di tutto, farlo vedere alle loro pazienti. Non ci sono stati convegni e palchi da cui parlare al contrario dello scorso anno. I medici si incontrano per convegni ogni settimana. Abbiamo deciso che la giornata per l’endometriosi è delle donne, dei loro famigliari ed amici. Quel giorno siamo noi che ci facciamo vedere e usciamo dal silenzio.

TEAM USA: On the tactical front, any tips that you’d like to share with this year’s new Country Partners? For example, how did you recruit volunteers to join your team? Did you have any luck getting in touch with journalists, elected or government officials? In general, what do you think was the most effective outreach strategy for just getting the word out? What was the least effective strategy?

AM: We have not in Italy, as in America, volunteers. The day of the march all participate and do something: who inflates balloons, placards writer who watch others work (always happen :)) As for the journalists there is always trouble. This disease makes no audience before the event and despite writing to all the major newspapers to warn them of the march, no one talks about. They are found only articles in online journals written by friends gironalisti. We tried to invite famous women suffering from endometriosis to have more media feedback but no one has ever bothered to reply. I’m very sorry. The city of Rome has never been on our side. When we went to the House for the second flash mob I was really bad that we had cordoned off the square as if they expected to see a gang of mad. Then I read that a few days after the House was blue for the World Day of autism and I wonder how come for the day moldiale endometriosis did nothing. The strategy is to make it talk to someone important to us but it is very difficult.

AM: Noi in Italia non abbiamo, come in America, volontari. Il giorno della marcia tutti partecipano e fanno qualcosa: chi gonfia palloncini, chi scrive cartelli chi guarda gli altri lavorare (succedere sempre 🙂 ) Per quanto riguarda i giornalisti c’è sempre difficoltà. Questa malattia non fa audience e nonostante prima dell’evento scriviamo a tutte le testate principali per avvisarli della marcia, nessuno ne parla. Si trovano articoli solo in giornali online scritti da amici gironalisti. Abbiamo provato ad invitare donne famose malate di endometriosi per avere più riscontro mediatico ma nessuna ci ha mai degnato di risposta. Mi spiace molto. Anche la città di Roma non è stata mai dalla nostra parte. Quando siamo andati a Montecitorio per il secondo flash mob sono rimasta veramente male che ci avessero transennato la piazza come se si aspettassero di vedere una banda di scalmanate. Poi leggo che dopo qualche giorno Montecitorio era azzurra per la giornata mondiale dell’autismo e mi chiedo come mai per la giornata moldiale endometriosi non hanno fatto niente. La strategia è farne parlare da qualcuno di importante ma da noi è molto difficile.

TEAM USA: Any other highlights you’d like to share?

AM:
Video della marcia con interviste
Flash-mob Montecitorio
Flash-mob Piazza di Spagna

TEAM USA: Thank you so much for taking time out of your busy day to share your experiences!! Team USA salutes you for persevering and contributing so much to the endometriosis community, not only to those in your own country, but to those of us around the world who’ve been so inspired by your team’s hard work and sacrifices. We are honored to have you as a cherished partner in this important cause.

TEAM ITALY CONTACT INFORMATION
Alina at endomarch.italy@gmail.com
WEBSITE
FACEBOOK
TWITTER
BEAUTIFUL PICTURE’S OF ITALY’S ENDOMARCH 2015



STAY TUNED FOR MORE INTERVIEWS FROM
– Team USA Chapter Presidents & Precinct Managers
– Team Int’l Country Captains, Country Partners, & Precinct Managers

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