The Atlanta Journal-Constitution
Patient advocacy group aids those with fertility condition
Polycystic ovary syndrome linked to host of health issues.
Sasha Ottey missed a couple of her monthly cycles. That was unusual. Tests were run, and the ultrasound revealed that she had PCOS, known as polycystic ovary syndrome.
Ottey, who was 28 at the time, told her doctor she was still concerned about not having her period.
“She told me, ‘Don’t worry about it. There are plenty of people who would love not to have their period. Just come back to see me when you want to have a baby.’”
“She (the doctor) missed my main concern. At that point having a baby was not on my mind at all. I didn’t even discuss that with her,” she added.
Ottey felt dismissed. Lacking information to understand her diagnosis and what it meant led the microbiologist who was working at the National Institutes of Health in Maryland to seek her own answers.
She concluded that researching PCOS and its vast impact is like peeling back layers of an onion: It intrudes on one’s physical health, mental health, quality of life and economic health.
Ultimately, her experience as a patient and lack of support led her to create the nonprofit PCOS Challenge: The National Polycystic Ovary Syndrome Association. Its mission is to “raise public awareness about PCOS and help people with the condition overcome their symptoms and reduce their risk for life-threatening related diseases such as diabetes, cardiovascular disease and cancer,” according to the website.
The numerous symptoms vary among individuals, but some of the common signs are irregular periods, weight gain and high androgen. Ottey said that many teens or adolescents “need a lot of support from family, friends and health care team,” adding that often those with PCOS feel alone or that they have done something to cause it.
The disorder is driven by genetic, environmental and other factors, but due to the lack of funding for PCOS research, there remain many unknowns, the founder said. To date, there is no cure.
“PCOS is one of the most common causes of female infertility. However, one of the bigger issues that spans beyond your reproductive years is the metabolic issues that PCOS causes, such as becoming hypertensive or having risk factors for heart disease or other metabolic diseases. Seventy to 95% of PCOS patients or those with PCOS will be insulin resistant,” the founder stated. “This puts you at high risk for becoming diabetic.
“Fifty percent of people with PCOS will become diabetic or pre-diabetic before age 40, and if you’re Hispanic, Black or Asian you’re at higher risk for some of these cardiometabolic risks associated with PCOS. None of this was relayed to me when I first got diagnosed by this doctor.”
PCOS Challenge provides access to education through multimedia events. Its annual PCOS Awareness Symposium has educated thousands of patients and health care providers.
Through its legislative advocacy, the nonprofit has made significant advances in spreading awareness of this health problem. In 2017 the nonprofit had the first congressional briefing on PCOS, Ottey said.
The founder says that self-advocacy is the “catalyst” to empower others, and by doing so, the community voices will lead to research funding and equality in health care.
Shelby Goodrich Eckard from Dacula wrote in an email to the AJC, “PCOS Challenge helped me connect the pieces of my PCOS puzzle. Not only did they offer access to the newest research and education, but they foster a community to empower people with PCOS to fight for better care and use their voice for change.”