Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Leah’s ME/CFS Story

Leah’s ME/CFS Story:
I was a 20-year-old enjoying adventures.
Then I developed an infection that changed my life.

Leah Stagnone shares her story:

Nearly six years ago, I was a 20-year-old student on summer break from college, enjoying an adventurous season with weekends full of hikes, road races, and time at the lake. I had a job as a nanny and was frequently waking up at 5 AM to go to the gym. Life was busy, full, and exciting until early July, when I developed an infection that irrevocably changed my life. Rather than recovering as expected, I experienced ongoing pain, exhaustion, fevers, dizziness, and neurological symptoms so debilitating that I had to withdraw from my fall semester. I only returned part-time in the spring, and simply making it to class often felt like a monumental physical feat. Over the course of several years, I went on to be diagnosed with ME/CFS, POTS, Ehlers-Danlos Syndrome, mast cell activation syndrome, and other complex chronic conditions.

 

I’m privileged to be less severely impacted by ME/CFS than most, but this disease has still altered my life tremendously. Once a long-distance runner, I can no longer exercise at all. Even a short walk through the neighborhood with my dog can leave me in bed for days. I cannot work full time and have been unable to move out of my family home.

I graduated college a year late, after taking summer and winter break courses to catch up on credits. It has been very challenging to find doctors within my insurance network who are familiar with my medical conditions at all, and even the ones with good awareness are limited in the ways that they can help me.

I wish more people understood that complex chronic illness is something that can happen to anyone, often when we least expect it. I am not sick because of something I did. I was living an extremely healthy lifestyle when I became ill, and that didn’t protect me. I also wish more people recognized that our current inability to effectively help people experiencing long COVID is related to the minimal attention that complex chronic illness, particularly post-infectious illness, have received for decades. We could have been more prepared.

On my hardest days, I find hope in the slowly increasing public awareness around my chronic illnesses, the promising research funded by OMF, and the important advocacy work happening by people with complex chronic illness and their loved ones all over the world. I believe that better awareness and more funding for research can bring effective treatments within my lifetime. This is why I’m a monthly donor to OMF.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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