April 2019 to “Shine a Light on PMDD” - Disorder with an increased risk of suicide affecting women and AFAB individuals of reproductive age

April 1, 2019 IAPMD

A global awareness campaign kicked-off this April to help “Shine a Light on PMDD” on a little known, debilitating and life-threatening condition that takes an average of 12 years to be correctly diagnosed.

Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder which impacts approximately 1 in 20 women and individuals assigned female at birth (AFAB) of reproductive age - a staggering 60 million worldwide. With symptoms including severe depression, mood swings, irritability or anxiety appearing in the two weeks before menses, PMDD takes a toll on sufferers’ ability to work and maintain relationships with partners and family. Preliminary findings from our 2018 Global Survey of Premenstrual Disorders* indicate that out of 1,425 patients with prospectively-confirmed PMDD:

16.8% reported having lost a job due to PMDD

56.7% reported having lost an intimate partner relationship due to PMDD
98% and 97% feel PMDD puts a significant strain on their intimate partner relationship and family relationships, respectively
42.7% reported problems with parenting due to PMDD, with 10.5% feeling completely unable to parent during PMDD

The relentless emotional and (for some) physical pain also drastically increases the risk of suicidal behaviors. In the same survey, 30% of patients with PMDD reported that they had attempted suicide to escape their symptoms*. Sadly, this number does not include those with PMDD who have died by suicide, which suggests that 30% is a low estimate for the rate of suicidal behaviors in PMDD. Appropriate identification and treatment of PMDD are therefore important not only for reducing suffering but also for saving lives.

The same survey also showed it takes an average of twelve years and six healthcare providers to receive an accurate diagnosis of PMDD*. After years of suffering, individuals with PMDD describe learning about the disorder as a ‘lightbulb moment’.

“PMDD has been invisible for far too long,” according to Amanda LaFleur, Co-Founder & Executive Director, International Association for Premenstrual Disorders (IAPMD), the global leader of PMDD awareness and education. “It’s underdiagnosed, misdiagnosed and, at worst, the lack of understanding leads to harmful ridicule and shaming of suffers. During PMDD Awareness Month we need to create millions of life-changing lightbulb moments across the globe so people can get the support and treatment they need!”

This year, IAPMD is again collaborating with a coalition of organizations, including U.S.-based Me v PMDD and U.K.-based Vicious Cycle: Making PMDD Visible, to ‘Shine a Light on 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 story.

Individuals with PMDD are encouraged to add their voice to the women's reproductive and mental health movement and receive timely updates on work underway to inspire hope and end suffering in those with premenstrual disorders.

“This is a galvanizing movement in women’s health,” according to Sandi MacDonald, IAPMD Board President. “PMDD is a perfect storm where #MeToo and #TimesUp, meets mental health awareness, meets suicide prevention. This campaign will be that ‘eureka!’ or ‘light bulb’ moment of insight, and then sufferers and activists around the world are empowered to raise awareness of PMDD and increase access to effective treatment options.”

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 done 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 International Classification of Diseases (ICD) for years, it continues to be disregarded or misunderstood by doctors and the general public.

*Note that these 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:

Amanda LaFleur

Co-Founder & Executive Director, IAPMD

amanda@iapmd.org

www.iapmd.org

1-800-609-PMDD (7633)

Laura Murphy

Project Co-Founder/Director, Vicious Cycle

hello@viciouscyclepmdd.com

www.facebook.com/viciouscyclepmdd

Twitter: @viciouscyclepmd