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April 2020 to “Ignite the Fight” Against PMDD - Life-threatening, Invisible Premenstrual Illness

A global awareness campaign will kick-off in April 2020 to help “Ignite the Fight” against a life-threatening chronic condition that is commonly underdiagnosed, misdiagnosed or dismissed entirely by many in the medical community.

Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based disorder that impacts approximately 1 in 20 women and AFAB (assigned female at birth) individuals of reproductive age - a staggering 60 million worldwide - yet most of us have never heard of it. Symptoms include severe depression, mood swings, irritability, or anxiety in the two weeks before menstruation, taking a toll on the ability to work and maintain relationships with partners and family. 

“The silence around PMDD is deafening!” according to Sandi MacDonald, Co-Founder & Executive Director, International Association for Premenstrual Disorders (IAPMD), the global leader of PMDD awareness and education. “It’s falling through the cracks between gynecological issues and mental health - and women are suffering and dying.”

During PMDD Awareness Month, the goal is to “Ignite the Fight!” The month will help unite the global community of millions of silent PMDD sufferers, educate and inform them to ignite their passion to fight PMDD by speaking openly and helping raise the first $1 million to accelerate progress toward creating a world where people with the condition not only survive - but thrive.   

PMDD Awareness Month activities will include:

  • Ignite the Night - Landmarks and iconic buildings across the world will be lit up teal, fading into the black night sky - the official PMDD color - during April as a powerful symbol of hope and community. Participants include Rochester Castle (UK), Sunshine Skyway/St. Petersburg(Florida/USA), Niagara Falls, and over 30 other buildings around the globe!

  • Social Media Campaign - Instagram #PMDDawarenesschallenge photo a day challenge for raising awareness and sharing experiences.

  • Ignite Your Fight - 5k, 10k, and a half marathon virtual runs. 

  • Launch a $1 million campaign to accelerate progress toward a world where people with the condition, not only survive - but thrive.  

PMDD is both hormonal and genetic. Researchers at the National Institute of Health in the US have found that women with PMDD have a genetic sensitivity to progesterone and estrogen, which results in a severe negative reaction to the natural hormone fluctuations during the luteal phase of the menstrual cycle. The  Global Survey of PMDs 2018* showed that 30% of those experiencing the condition had made a suicide attempt during a PMDD episode. Shockingly, patients also waited an average of 12 years for an accurate diagnosis and saw six healthcare providers in the process.

This year, IAPMD is again collaborating with a coalition of organizations, including Me v PMDD Symptom Tracker App and international patient-led awareness campaign Vicious Cycle: Making PMDD Visible, to ‘Ignite the Fight’ against PMDD. Resources to support awareness-building are available on pmddawarenessmonth.org. Website visitors can access the PMDD Awareness Month Toolkit, find facts and figures about PMDD, create a fundraiser, and share their stories. 

“This is a galvanizing moment in women’s health,” according to MacDonald. “PMDD is a perfect storm where #MeToo and #TimesUp, meets mental health awareness, meets suicide prevention. This campaign will bring to life the idea that from a single spark we can cause an explosion - a global transformation to improve PMDD detection, diagnosis, and care!”

While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance but rather a severe neurobiological reaction to the natural rise and fall of estrogen and progesterone. Symptoms occur the week or two before menstruation and go away a few days after bleeding begins. There is no blood or saliva test to diagnose PMDD, but these tests can rule out other underlying disorders. Diagnosis is made by tracking symptoms for at least two menstrual cycles. As noted above, women and AFAB individuals with PMDD are at an increased risk for suicidal behavior. Although PMDD has been included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and was added to the International Classification of Diseases (ICD) in 2019, it continues to be disregarded or misunderstood by doctors and the general public. 

*Note that the findings of the 2018 Global Survey of Premenstrual Disorders are still pending scientific peer review and publication by our Clinical Advisory Board. These numbers reflect our organization’s internal analyses aimed at understanding the scope of the problem of premenstrual disorders. 

 

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Organizational Contacts:

Sandi MacDonald, Co-Founder & Executive Director, IAPMD

sandi@iapmd.org

iapmd.org

1-800-609-PMDD (7633)

Lynda Pickett, Vicious Cycle

lyndasviciouscycle@gmail.com

viciouscyclepmdd.com

Brett Buchert, Co-Founder & CEO, Me v PMDD, Inc.

brett.mevpmdd@gmail.com

mevpmdd.com

727-902-8398