PCOS Advocacy Day 2018
I had the pleasure of attending PCOS Advocacy Day, put together by PCOS Challenge. Sasha Ottey, Executive Director and William Patterson, Director of Public Affairs of PCOS Challenge did a wonderful job bringing together so many brave women to tell their story to provide awareness and additional research funding for the disease. I have been following PCOS Challenge for quite some time and reached out to Sasha to help advocate and to tell my story.
At a young age, I found it difficult to lose weight, despite playing tennis multiple hours a day. While I was not considered “heavy” I was not the size I should be due to how active I was. I went to many doctors, some who put me on weight loss pills and strict diets, none of which worked. Finally, I found a doctor who was familiar with PCOS and matched my symptoms. They ended up doing a sonogram to see if I had cysts on my ovaries, which I did. While being heavier was what drove me to get this checked out, I found that PCOS would provide additional challenges to my health as I got older. Most notably, insulin resistance (which is why it was difficult to lose weight) and fertility challenges (when I am ready to have kids). Even though I was diagnosed, many doctors and nutritionists didn’t know how to fix the problem. They focused on the symptoms and prescribed medication, none of which worked. I had to learn how to live day to day with this disease through my own trial and error. It wasn’t until I started lifting weights and eating multiple times a day that I started to feel better and lose weight. It took me almost 20 years to figure that out!
Spending two days with these women, I learned I was not alone in my journey and the big impact additional funding for PCOS research would have for millions of women.
Wednesday afternoon was spent learning more about PCOS from Dr. Felice Gersh, MD. While I know my symptoms, there were many others connected that I wasn’t aware of. Those impacts include insulin resistance, fertility challenges, fatty liver, autoimmune disease, GI challenges and arthritis. I can only imagine what else would be uncovered if this became a bigger focus for NIH. We then heard from Lauren Lattany, Assistant Director of Public Policy for American Osteopathic Association, on the best way to advocate on the Hill. The main point was to be open, that each representative is interested in your story and how they can better their district.
Thursday was spent in the House of Representatives, discussing the cause. There was a resolution passed in the Senate (S.Res336) in December 2017 that recognized the seriousness of PCOS and provided support for September 2018 to be “Polycystic Ovary Syndrome Awareness Month” There is a similar resolution currently in the House (H.Res495).
I had the pleasure of meeting Rep. Barbara Comstock to discuss my story and the impact of passing this resolution. Rep. Comstock had already voted to pass this resolution as she is passionate about supporting research at NIH. We discussed the challenges many people face when themselves or a loved one has an illness. That at times people will research their symptoms and learn everything they can. There are other times when people don’t have the ability to do as much research themselves. It is not uncommon for women to self diagnose their PCOS. This is where the research from NIH for PCOS would make a huge impact.