I’m holding Australia’s (maybe the world’s?) first ever National Action Plan for Endometriosis 😆😆 just launched by Greg Hunt MP .
A few months ago I was sitting at the Roundtable Meeting in Melbourne with 40 other experts in the field of endo, sharing all your stories, your wants, your needs, what WOMEN AND GIRLS WITH ENDO want and need, and all my ideas for solutions to the enormous public health issue that is #endometriosis.
EXCITING NEWS! EndoActive has been accepted to present some of our work at the World Congress on Endometriosis in Vancouver!
This is another HUGE milestone for us. Time for a little story…
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All the photos from EndoActive’s Party for a Cause at Neighbourhood Bondi on March 18 to celebrate Endometriosis Awareness Month and raise funds much-needed for EndoActive. We had so much fun!! Syl xx
Although this article in Latte was from July 2015 – it was a great awareness piece on endometriosis. A huge thanks to Business Chicks for featuring EndoActive and providing important health information about endo.
Click through to read the full article.
Hey EndoActivists,
Here I am talking about Endometriosis to a packed auditorium of hundreds of people a few weeks ago. I was in Melbourne speaking at HISA’s Health Informatics Conference as a patient advocate who has used social media to create an online community of wonderful women and raise awareness of Endometriosis.
It wasn’t long ago that I was slumped on the couch day after day in chronic pain, miserable as hell, consumed by sadness and anxiety, with no hope for the future. Becoming an activist and a patient advocate has completely turned my life around. I never ever ever would’ve imagined that the disease that was once destroying my life would now be my Ikigai – a Japanese word meaning ‘reason for being’ or reason to get up in the morning.
EXCITING NEWS FOR ENDOMETRIOSIS PATIENTS AND ACTIVISTS!
Yesterday I got notice of a collaboration between pharmaceutical company Bayer and Evotec regarding treatment of Endo.
With not much other information it’s easy to be cynical of this news. Of course this treatment won’t be a cure. Of course both parties will be interested in making a profit – such is the way of the world. And that’s ok.
I’m not sure whether this treatment option will be helpful or not. Let’s hope that it is.
BUT – I’m so so excited by this news because it is a sign that Endo is being recognised as a serious health issue costing billions of dollars in lost productivity a year. It shows that big pharma is willing to put money into Endo and without their financial support and investment, no progress will be made. As a close friend of our told me on the phone this morning – researchers and scientists can beaver away doing their wonderful work all their lives but without funding, that research and science will stay in the universities and the labs. That work will stay in silos.
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.
In 2014 I was incredibly sick with Endo and had been for years. At that time I
✖️Couldn’t work due to pain
✖️Barely made it to uni
✖️2nd laparoscopy with shocking recovery
✖️Awful pain and fatigue all the time
✖️Miserable. Flat. Didn’t see a future.
✖️constantly medicated
✖️Cried A LOT
If you told me then that in 18 months
✅I’d be pain free, learned how to self-manage my Endo, healthy, full of energy
✅Legalised a drug in Australia to treat Endo (Visanne)
✅Started a change.org petition with 75,000 signatures
✅Built an online community of nearly 8000 incredible people raising awareness of Endo together
✅Froze my eggs
✅Held a conference on Endometriosis at University of Sydney
✅Started my Masters in Health Communication at Sydney University
I would never ever ever ever have believed you in a million years. Ever.
For those of you who are struggling to cope, living in pain, can’t see a way out – I have been there!!
Colposcopy No. 2 … sounds like a lucrative perfume empire doesn’t it? I should really hit up Coco Chanel’s people and see if they’d like to endorse it. Sorry this update has taken me a while to publish – life has been extremely busy with social media buzz from that misleading CNN article, family health stuff (prefer when it’s me that’s sick than people in my family!) + new job. So my apologies for the delay!
Anyways on January 18 this year I went and had my follow-up Colposcopy No. 2 – 6 months after Colposcopy No.1. Last time I had the procedure done in hospital under anaesthetic in case there were any abnormal cells that needing lasering off. CIN2 cells were found on my cervix during that procedure which meant I had ‘pre-cancerous’ cells developing.
Dear CNN, Nadia Kounang and Dr Scott Sullivan,
Yesterday my absolute hero, Lena Dunham, did something incredible for Endometriosis. She got the world talking about it. Dunham announced that she’s been forced to pull out of the promo tour for her hit TV series GIRLS due to an Endo flare-up. I was heartbroken for Lena. But, as the Co-founder of EndoActive – an Endometriosis Activism Group – I was grateful and proud that she had shared this information on social media and thrilled that the media had picked up on it. Any publicity for Endo is good publicity, right? Wrong.
I am absolutely horrified by what you, CNN, have published. You had not only an opportunity to report on an under-publicised, insidious disease that is destroying lives and desperately needs to be taken seriously, needs attention and needs funding but you had a responsibility to report factual, evidence-based research supported by compassion, care and a positive message. To my horror and the horror of the thousands of women I represent, you have grossly missed the mark and published instead an unsavoury, chauvinistic, factually incorrect, medically and morally irresponsible piece of writing that helps no one and in fact undoes so much of the hard work that EndoActive and so many others are doing daily.