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.
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