A Conversation with the Founder of the Polycystic Ovarian Syndrome (PCOS) Awareness Association
Megan Stewart founded the Polycystic Ovarian Syndrome (PCOS) Awareness Association (PCOSAA) due to her personal struggles with the endocrine disorder. She wanted to increase awareness for the condition, which affects over 7 million women – more than the number of people diagnosed with breast cancer, rheumatoid arthritis, multiple sclerosis, and lupus combined, according to a quote on the website.
Stewart has done all this while earning her Masters in Leadership and working full-time for the Boeing Company, leaving her about 10 hours a week on PCOSAA tasks. She calls the organization her passion and her baby. PCOSAA is completely volunteer-based, with about 30 volunteers worldwide that assist with tasks and projects.
Now that 2016 is almost over, WomensHealth.com talked with PCOSAA about the latest research and developments this past year and what’s ahead.
WomensHealth: What PCOS research from 2016 are you most excited about?
Dr. Janelle Luk, PCOSAA Advisory Board Member: I am most excited about the diet and lifestyle research to alleviate PCOS symptoms. This involves a number of alternative diet regimens that largely focus on balancing blood sugar and insulin levels with high-fiber, low glycemic index foods.
WH: What new PCOS therapies or drugs are available that our readers should know about?
Dr. Luk: Letrozole, also known as Femara, is a drug that essentially suppresses estrogen levels in women and further stimulates an increased production of FSH (follicle stimulating hormone). Women with PCOS often struggle with infertility and higher FSH levels help to develop mature follicles and thus support the ovulation of eggs.
WH: What areas of PCOS research are you most excited about for the future?
Dr. Luk: I am excited for more work to be done regarding alternative diets and lifestyle changes for women with PCOS. As therapies and drugs do not always cure women of all symptoms, it is important to spread awareness and understand what can be done on a daily basis to alleviate pain and discomfort.
WH: While PCOSAA doesn’t do medical research, are you excited about any developments over the past year?
Megan Stewart, PCOSAA founder: PCOSAA actually has a Leadership Board member, Jen Plouffé, who is in medical school, and for her degree research paper, she is writing a document for medical review on the Rotterdam criteria is obsolete and not useful for adolescents and women over 40. The use of serum-Anti Mullerian hormone (a male hormone indicator) is not only more accurate, but useful across all age and ethnic groups. But in the U.S. no one is aware of this method, even though it is 96 percent accurate compared to 82 percent. This study will help rethink how PCOS is diagnosed in the U.S. as compared to European countries.
[Also,] this year we fulfilled one of our goals by working with another organization to design and launch a social media website similar to Facebook but specifically for women with PCOS, named myPCOSTeam.com. This website is amazing; it not only allows women with PCOS to create a profile, connect to other women with PCOS (local and non-local), but you can create a PCOS Team where you can include your medical professionals and any other qualified support system.
WH: What is the biggest challenge in the PCOS community, and for PCOSAA?
MS: Due to government funding being less than .01 percent for PCOS, there are not many studies for the disorder. This is the biggest challenge in the PCOS community. At PCOSAA the biggest challenge is fundraising and gaining donations to continue our journey. We would love to be able to fund a study, but we barely bring in enough donations to keep us running. Gaining support from potential sponsors has been a huge challenge. We have taken a step back and have built our organization using partnerships with other organizations to help each other raise awareness of our causes and products.
WH: Why has it been so challenging to get support from sponsors and donations? Is it because there’s not enough awareness for the disease?
MS: PCOSAA has literally reached out to public figures, radio shows, television shows, and athletic organizations. Some we receive responses and others we never hear from. We have received very disheartening responses like “PCOS isn’t sexy enough to market,” or “Your followers need to adopt instead of trying to give birth,” or “You can’t die from PCOS.” These are some of the very reasons women with PCOS are embarrassed, feel alone, are depressed, and have high anxiety!
WH: Can you elaborate on how you’re building your organization and what other organizations you’re partnering with? Has this made a difference so far?
MS: PCOSAA has prided itself on our partnership abilities. Because we have found it near impossible to gain sponsors and donations, we have built the organization on the thought that the more organizations we partner with, the more we can get our name and mission out to the public while still fulfilling our mission of raising awareness. We have an awesome lineup of partners. We believe this has made a huge difference, not only for the women we help directly, but also in building our brand and connections.
WH: Do PCOSAA members have any feedback or success stories?
MS: I actually started PCOSAA due to my own personal struggles with PCOS. I was actually admitted into my local ER due to excruciating pain in my abdomen. The attending nurses and physician completed my admission only to tell me that the cysts on my ovaries were rupturing and there was nothing they could do. I had to go through the pain.
When I left the hospital, I decided that their response was not enough. I began doing research and finding that I was not alone, and at this point I decided to begin raising awareness of PCOS. I started selling homemade teal (official color for PCOS) bracelets to friends and family and before I knew it, I had people in England and Australia contacting me requesting bracelets. I found this to be a sign of things to come, so I took the funds and paid the IRS for the 501c3 status.
That was in 2012 and today we have over 50,000 followers. Over the last two years I have gone on a natural health path and have come off all medications (not recommended for everyone). I eat healthier, exercise three to five times a week and see a women’s health acupuncturist. I have lost 50 pounds on this path and have gained my menstrual cycle back.
WH: What can women with PCOS due to help organizations like yours? What can other women (without PCOS) do?
MS: PCOSAA is in dire need of dedicated volunteers with marketing, design, and event planning skills. If we can get volunteers in these areas, we will not have to pay for these skills and the funds can go directly towards projects. 2017 is going to be a special year because we are hosting the world’s first National PCOS Walks, we plan on getting more involved in the government aspect of influencing public policy, we have our third annual medical professional conference, and we have a few other tricks up our sleeves for the year. Other ways individuals and organizations can get involved can be found under the Get Involved tab of our website.