It’s Gonna Be May – It’s Gonna be Ehlers-Danlos Syndrome Awareness Month

May is Ehlers-Danlos Syndrome Awareness Month, so Global Genes its very own Mackenzie Abramson, Senior Manager of Research Program Communications, who was diagnosed with Ehlers-Danlos syndrome (EDS) to share her experience as a patient and advocate:

Now, don’t get me wrong, like any girl that grew up in the 90s, I was all in on the boy band fan fare. N*Sync was even my first concert at 8 years old. However, when the “It’s Gonna Be May” memes start to pop up, I am reminded what a monumental month May is as a patient and advocate. You see May is Ehlers Danlos Syndrome Awareness month, which if you know me, is the first diagnosis that catapulted me into this field. 

However, I went 24 years from my first medical emergency as an infant until my diagnosis.

I was born with a ureter defect. They weren’t connected to my bladder or kidneys properly – quite literally a connective tissue issue. However, no one thought, maybe this girl runs with the zebras not the horses.

Years of my life when I should have been enjoying teens and young adulthood were spent with medical gaslighting, unnecessary and dangerous surgeries, time consuming visits and management, and a lasting medical trauma and PTSD.

Being undiagnosed meant losing my bodily autonomy as a child.

Being undiagnosed meant my parents were told I was lazy and looking for attention.

Being undiagnosed meant being misdiagnosed.

Being undiagnosed meant being medicated incorrectly.

Being undiagnosed meant questioning my own sanity.

Being undiagnosed meant disbelief, distance, and disregard from friends.

With a diagnosis I had inner clarity, even if I still have to fight for proper treatment. Everyone deserves that feeling of inner peace and answers.

May is also Mental Health Awareness Month, Jewish Heritage Month, National Pet Month. May is when we recognize National Nurses Week, National Women’s Health Week, arthritis, celiac disease, myalgic encephalomyelitis / chronic fatigue syndrome, neuropathy, osteoporosis, and so many more. 

When I received my EDS diagnosis, I naively believed that would be it. There would be a cure or treatment for the years of unimaginable chronic pain and complications to my health. I believed that getting a diagnosis would mean that I would have all the answers and live a “normal” life. What I soon realized is that normal is a relative term. I learned that I was medically complex and over the years all of those May-Awareness conditions I mentioned began to apply to me. 

While I sometimes joke that it feels like I am just collecting my diagnoses at this point. It is significantly less burdensome than the fight as an undiagnosed individual. The fight to be heard and taken seriously.

Patients are the experts in their lived experience – BELIEVE THEM when they say something is wrong. 

For me, EDS Awareness Month is so much more than a single diagnosis month. 

💚 It is about advocating for quicker diagnostic timelines

💚 It is about acknowledging medically complex patients and their unique need for specialized care

💚 It is about finding treatments to make life manageable

💚 It is about utilizing mental health care as a preventative tool rather than a downstream afterthought

💚 It is about elevating more who struggle with chronic, rare, and invisible illnesses

💚 It is about driving forward knowledge through awareness

As I have learned to advocate fiercely and resiliently for myself through sharing my story, I challenge my community to do the same for this EDS Awareness Month.

Mackenzie Abramson is a Rare Advocate and Rare Patient diagnosed with Ehlers-Danlos Syndrome, as well as the Senior Manager of Research Program Communications for Global Genes.