April is Premenstrual Disorder Awareness Month. To mark it, we spoke with Sandi MacDonald - Co-Founder and CEO of the International Association for Premenstrual Disorders - about her lived experience with PMDD, what it took to build a global advocacy organization, and why she believes patient voices belong at the center of healthcare conversations.
Who Is Sandi MacDonald?
Sandi MacDonald wears a lot of hats: CEO, research collaborator, patient advocate, community builder. But the thread running through all of it is something personal.
For years, Sandi experienced severe cyclical changes in her mood, mental health, and sense of self — and had no framework for understanding why. "I spent years not understanding why I felt like a completely different person during certain parts of my cycle," she says. "If someone had explained that conditions like PMDD exist and that these changes can be cyclical and biologically driven, it would have saved a lot of confusion, shame, and self-blame."
That experience is what eventually led her to co-found the International Association for Premenstrual Disorders.
What Is PMDD — And Why Does It Matter?
Premenstrual Dysphoric Disorder is a condition in which the brain reacts severely to the natural hormonal fluctuations of the menstrual cycle. It's triggered by ovulation, with symptoms typically intensifying during the luteal phase - the one to two weeks before menstruation - and subsiding shortly after a period begins.
Those symptoms can include severe mood disturbances, intense anxiety or panic attacks, depression, anger, and can even include suicidal thoughts. The cyclical pattern is a key feature that helps distinguish PMDD from other mental or physical health conditions.
It's worth noting: PMDD is not a hormonal imbalance. Hormone levels in people with PMDD are typically normal. The issue is the brain's sensitivity to those fluctuations - a distinction that matters for both diagnosis and treatment.
And yet, many people with PMDD spend years being told they're overreacting. That they're "too emotional." That it's just PMS.
"Severe premenstrual conditions are real medical conditions," Sandi says plainly. "They are not just 'bad PMS,' and they can affect relationships, work, safety, and quality of life."
How IAPMD Came to Be
In 2013, Sandi and fellow advocate Amanda LaFleur launched a small online support network - a place for people with PMDD to find resources, feel believed, and share their stories. The need was immediate and obvious. People were suffering without language for what they were experiencing, without care pathways, and often without anyone who understood.
That patient-led initiative caught the attention of clinicians and researchers, and grew into the IAPMD - now a leading global organization for PMDD awareness, education, and advocacy. Today, IAPMD works with patients, clinicians, and researchers worldwide, producing evidence-based resources, training for healthcare professionals, peer support programs, and more.
"At its core, IAPMD is about ensuring that no one facing a premenstrual disorder has to do so alone," Sandi says, "and that their experiences are believed, understood, and taken seriously."
What IAPMD Offers
If you or someone you love might be affected by a premenstrual disorder, IAPMD's website is a genuinely useful place to start. Free resources include scientific papers and research materials, weekly peer support groups, and our favorite: a PMD symptom tracker - a practical tool for documenting patterns and advocating for appropriate care with a doctor.
That last one matters more than it might seem. One of the biggest barriers people with PMDD face is being dismissed before they even get to explain what's happening. A symptom tracker that maps mood and physical changes to the menstrual cycle can be the difference between a productive clinical conversation and walking out of an appointment without answers.
Looking Ahead
Province House in Halifax, Nova Scotia, lit up in teal for PMDD Awareness Month
Sandi's goals for IAPMD are both ambitious and grounded. She wants to expand professional education so clinicians are better equipped to recognize and treat premenstrual disorders. She wants to grow peer support infrastructure so people in crisis have somewhere to turn. And she wants to see premenstrual disorders taken seriously not just in doctor's offices, but in workplaces and communities too.
"Ultimately, the vision is simple but powerful," she says. "A world where premenstrual disorders are recognized, taken seriously, and properly supported within healthcare systems, workplaces, and communities. No one should have to suffer in silence because their condition isn't understood."
For people who've spent years being told their experience isn't real - or isn't serious - that vision is everything.