My beliefs, my dreams & the story of EndoActive.
Hey guys. Today I want to share with you my beliefs, my dreams for EndoActive and our story – why we’re here. It really is an incredible one and it involves all of you, so please, please read to the bottom. <3
My name is Syl Freedman, I’m 25 and I have Endometriosis. We call it Endo.
My Mum, Lesley, and I started EndoActive in August 2014 after campaigning to have a medication used to treat Endo available here in Australia. We got 75,000 signatures on our online petition (thanks to many of you for signing!!) and amazingly, we were successful. Visanne was released in Australia in March 2015.
It has helped many women, myself included, to finally live a life free of pain and most importantly, provided another treatment option for Endo.
After achieving the impossible, we had a fire in our bellies and felt determined to keep going.
19,600 comments were left on our petition. We read every single one of them, night after night, with tears streaming down our faces. Thousands of women expressed their anguish and pain. Partners were begging for help. Young girls told us they couldn’t go to school because of Endo. One man told us he’d lost his sister to suicide. He believed it was because she could no longer cope with the physical and emotional pain this disease had caused her.
We united in solidarity from the pain we were in. We started this page and EndoActive was born in our living room.
The messages and stories continued to pour in. 2 years later, they haven’t stopped. That is what keeps us going.
As a Mum and daughter struggling to understand this disease, we wanted more information about Endo. We wanted it to be taken seriously.
If 1 in 10 women have this disease then why had nobody heard of it? Well now, they have.
Endo got more publicity in 2014-2015 than it has in years! I even wrote a paper about it at uni. The figures are incredible. Some called it ‘the year of Endo’.
Last year, we decided to hold a conference in Sydney with 13 top specialists all sharing their knowledge about Endo. 250 of you came along. For most of us, it was the first time we had been in a room full of women who ALL HAD ENDO! What an incredible day. The speakers were amazing, Mum and I laughed and cried with all of you the entire day and into the night.
We were determined to produce an up-to-date information resource for people with Endo so that nobody else has to struggle to get evidence-based info like we did after my first surgery. We filmed every speaker and made a video resource available for everyone – ‘Shared Perspectives’.
Mum and I work tirelessly on EndoActive. You guys see our posts on this page, you may read my blog, you may have read some of the dozens of articles we’ve had published on Endo, hopefully you’ve watched Shared Perspectives.
BUT
what you don’t see is the hours we spend responding to thousands of emails and messages from people all over the world asking for our help. The phone calls late into the night to people at the end of their tether, desperate to get the right treatment or share their story. The research and planning of what we want to change for women and girls with Endo. We have BIG, HUGE ideas. The time we spend crafting content to generate a massive reach of people so that more and more people every day know what Endo is. The meetings with doctors, researchers, advertisers and mentors to formulate ideas about how we can get Endo out there.
On average, it takes a woman 8+ years to be diagnosed with Endo, despite years of living with painful symptoms. I want to reduce the diagnostic delay of Endo in Australia.
I want every one of us to have appropriate care, treatment and information. I’m tired of Endo not being taken seriously. I want kids to learn about it at school. I’m determined to make this happen.
WE WANT TO CREATE CHANGE! But as you may have guessed, we REALLY need your help.
EndoActive means the world to me and I want nothing more than to work on it full time. It’s my passion! But currently, we have no funding. Mum is retired and I’m a full-time student studying hard to learn as much as I can in order to help our cause.
Since the beginning, EndoActive has run on our personal funds. It’s a 24 hour job for which we receive no pay. We love it but we can’t afford to keep doing this.
There are so many things we want to do but we really do need your help. If everyone on this page donated even $10 – we could do great things.
Lots of love, Syl x x x <3
July 15, 2016 @ 11:41 am
Hi Syl, great to read what your mum and you have achieved and are still achieving. Are you planning another conference? I am a journo in Melb and the mum of a long suffering 23 yr old. I am buying the DVDs but wondering what else we can do to spread awareness?
Elaine
July 16, 2016 @ 9:11 am
Hi Elaine, thanks so much for getting in touch. So sorry to hear about your daughter. We are always looking for ways to raise awareness. I’m sure you could really help with your journo skills. Which publication do you write for?
Email me: sylvia@changefocus.com.au
September 1, 2016 @ 10:23 pm
Hi,
I was diagnosed with Endo when I was 14. I am currently 18, and my doctor still hasn’t really figured out what to do for me. I was in class and we were talking about activism groups and I realized that there isn’t much activism for Endo. Then I stumbled upon you. This has been really inspiring. I had no idea that Visanne was even a thing. So, thank you so much.
September 1, 2016 @ 11:31 pm
Hey Bex,
so glad you found my blog. Do you know about EndoActive? Maybe that’s how you found this page. Mum and I started EndoActive 2 years ago in August 2014 and have continued to be an endometriosis activist / advocacy group ever since. You can check out endoactive.org.au for more information including our dvd / streamable videos for the conference on endometriosis we held at Sydney Uni in May 2015.
I really encourage you to watch those videos because they’re FULL of info on treating, managing and coping with endo. So often our doctors don’t know what to do with us endo patients because they don’t know enough about the disease but our conference videos / dvd have helped so many girls just like you develop a long list of things to try in order to better manage their pain. I also give a presentation on there at the end.
Follow us on facebook if you haven’t already xx