ways, Sasha Ottey was lucky.
women with polycystic ovary syndrome like her, it can take
years and untold doctor visits before they get a correct
diagnosis. All too often, doctors end up treating the vast
array of symptoms caused by the hormonal disorder. Severe
acne. Sleep apnea. Obesity. Or thinning hair and excess hair
growth on the face or body.
Ottey’s OB-GYN pinpointed her illness in 2008 after just two
missed periods and one visit. Problem is that was it.
gave me a pamphlet, referred me to an endocrinologist and
said, ‘Come back to me when you are ready to conceive,’
" Ottey recalled recently.
followed up with the endocrinologist, Ottey, then 28, was told
to lose weight and come back in six months.
decided I needed to see a nutritionist, but my insurance
wouldn’t cover that because I was not a diabetic," she
then a research microbiologist for the National Institutes of
Health based in Bethesda, Md., began digging deeper into PCOS
and soon realized the syndrome is one of the most pervasive
and underserved public health issues threatening the mental
and physical health and quality of life of women and girls.
decided then she had to do something and within months of her
diagnosis in 2008 founded the PCOS Challenge: National
Polycystic Ovary Syndrome Association, a nonprofit which works
to raise awareness about the condition and help girls and
women with the condition overcome their symptoms and reduce
their risk for related diseases.
the dearth of resources and evidence-based information about
PCOS, Ottey, executive director of PCOS Challenge, discovered
there was little funding allocated for research and few
doctors even aware of the syndrome.
is a platform for people to learn accurate information, get
support and to empower themselves as advocates for the
cause," Ottey said.
of support she felt from her doctors became a defining moment
in her life. Ottey, who moved to McDonough in 2012, decide to
leave her lab coat behind and respond to what she believes is
her calling: ensuring a better future for those impacted by
retrospect, many of the symptoms — the acne, thinning hair
and weight gain — I experienced growing up were directly
related to PCOS," she said. "This isn’t just a
reproductive health issue. This is a lifelong condition and it
leads to some of the heaviest burdens on health care. I know
many people who have lost their jobs, lost their relationships
because of PCOS, so there’s a tremendous and urgent need to
address PCOS and take it seriously."
news is interest in PCOS among lawmakers here and across the
country is increasing.
December, the U.S. Senate, in response to PCOS Challenge’s
advocacy efforts, unanimously passed SR 336, a resolution led
by Sens. Elizabeth Warren, D-Mass., and David Perdue, R-Ga.,
to recognize the seriousness of polycystic ovary syndrome, and
designate September as PCOS Awareness Month.
just weeks ago, U.S. Rep. David Scott, D-Ga., and 37 other
leaders in the U.S. House of Representatives reintroduced a
U.S. House version, HR 864.
Challenge will host its first PCOS Advocacy Day May 16 and 17
on Capitol Hill. Patients, celebrities, health care providers
and industry professionals wearing teal, from close to 30
states, will meet with members of Congress and deliver over
1,000 letters from affected women, families and servicewomen.
letters highlight the major gaps in diagnosis and care, which
are resulting in serious health consequences for many,"
Ottey said. "They also point to the need for more
knowledgeable health care providers and increased PCOS
be a huge moment for Ottey and the PCOS community.
first time, women and girls with PCOS will have a platform to
educate their legislators about the disorder, its prevalence
and significant impact in their districts and states.
to Dr. Mark Perloe, medical director at Shady Grove Fertility
Atlanta, nearly 15 percent of women — 200,000 in Georgia
alone — have been diagnosed with PCOS, which can lead to
infertility, Type 2 diabetes, cardiovascular disease, cancer
and other life-threatening diseases. More than 50 percent of
women who have PCOS don’t know it.
can emerge in girls as early as puberty — age 13 or even
younger — while others may not show signs of the disorder
until much later in life, or after substantial weight gain.
majority of women don’t receive a diagnosis until they are
struggling to get pregnant.
there is no definitive cause of PCOS, Perloe said research
suggests a strong link to insulin resistance, a genetic
condition often associated with diabetes, in which the muscle,
fat and liver cells do not respond properly to insulin and so
can’t easily absorb glucose from the bloodstream. As a
result, the body produces higher and higher levels of insulin
to help glucose enter the cells.
worse, Perloe said, is "You don’t cure it. You manage
it. It’s not easy. It’s not going to happen
helps, however, if you have a multidisciplinary team you can
trust so that when new information comes out, you can take a
knowledge-based holistic approach to managing the condition.
the whole, the approach involves eating right, doing the right
type of exercise, and insulin sensitizers, such as metformin
and inositols, that allow your body to reduce insulin levels
and restore hormonal balance," he said.
and successfully managing PCOS can help reduce many of the
most challenging, debilitating medical conditions and bring
about significant cost reduction in managing complications due
to diabetes, heart disease, obesity and mental health related
line? Women need to arm themselves with knowledge and advocate
for better care. PCOS Challenge can help with that.