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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

Weekly Warrior: Meet Jen

February 10, 2023 Laura Mullen

“Hi, my name is Jen. I suffer from Myasthenia Gravis. It is a rare neuromuscular autoimmune disease. My body creates antibodies that block the receiving signals in my muscles. So my brain will send out a signal, but it has nowhere to go. Then my muscles do not respond and I almost look like a stroke victim.

Because MG it is so rare, it took years of my health declining before I got a diagnosis. I believe I have had Ocular Myasthenia Gravis my entire life. Ocular MG is when you have blurry/double vision and droopy eyes.

About 4 years ago I was going through a very stressful time in my life. This is when my MG generalized , meaning it was no longer just my eyes but my voluntary muscles being affected now. Generalized MG symptoms include all ocular symptoms, plus weak neck muscles, weak diaphragm, weak arms and legs, difficulty chewing/swallowing/talking. So I struggle to do just about anything.

In July 2021, I had a thymectomy, which drastically improved my symptoms. A thymectomy Is the removal of your thymus gland. This was in hopes of getting me into remission for a period of time. But so far I am not there yet. Yet!

This is a life long battle and I will not give up the fight. I continue to raise awareness for my community. Please follow me on TikTok @myastheniawarrior to learn more about MG and my struggles.”

Filed Under: Patient

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