Rare disease cost Leah more than her health: “I’ve lost a lot of friendships”

UpdatedOctober 30, 2020

Leah found that living with myasthenia gravis (MG), an “invisible” disease, was often misunderstood by her friends and family. With her incredible strength and positivity, Leah has navigated through her hardships and now celebrates a community dedicated to uplifting rare disease patients.

By Catherine Cooke Leah

Trigger warning: This post includes discussion of sexual abuse and trauma.

“People say, ‘you look great,’ when I really feel like spaghetti.”

Leah’s rare condition is not always obvious to people around her. MG is a chronic autoimmune disease that causes Leah’s antibodies to attack themselves, giving her blurry vision, muscle weakness and stumbling speech.

What’s more perplexing, though, is that the symptoms can fade in and out. One day, she wakes up fine, while the next day she can barely get out of bed. The unpredictability, in combination with a lack of outwardly apparent physical symptoms, has hurt many of Leah’s relationships: “I’ve lost a lot of friendships because of it. They don’t understand that when they invite me to a party and I can’t go at the last-minute, that they shouldn’t take it personally. I’m just too tired with getting dressed and getting ready.”

While some relationships have been painful to step away from, others have been for the best.

Tragically, several years ago, Leah was molested by a family member– an event that precipitated a rift with her family. Although she was bold enough to stand up and voice what happened, her loved ones did not condemn the behavior of her abuser and continued including him in family events. For years, she sat side by side with the very man who had caused her so much pain.

When Leah was diagnosed with MG, she realized, “I had to make adjustments to prevent myself from getting tired... One of the things I noticed is that stress in my life caused flare-ups of my symptoms.” Her family, along with the gossiping and emotional turmoil that came with them, was one of the biggest sources of stress for Leah, and she “got to the point where I had to disconnect from them. I was able to breathe, and I was able to come into a positive mindset. Maybe this is what had to happen for me to break away.”

Beyond relationships, Leah’s battle with MG has spurred many other life changes: “I haven’t been working since my diagnosis in 2015. I used to do ballet, and I can’t do that anymore because I get tired. I can’t walk or exercise. I can’t cook big meals or bake, which were things I loved to do.”

However, Leah keeps a positive outlook. If she wants to bake cupcakes and do gardening work, both of which she enjoys, she’ll take a long break in between or plan to do them on separate days. She is not giving up on the things that bring her joy.

Leah has also found a way to use her downtime for good. She has joined AllStripes, a rare disease platform that allows her to be part of multiple studies for her condition without leaving her home. By contributing her de-identified medical data to AllStripes, she can be part of powering rare disease research in a way that fits into her lifestyle.

“We need more things like AllStripes,” she shares. “Having AllStripes do all the work by putting all the information for MG together and telling us what clinical trials are out there – what clinical trials are good for YOU – makes it so much easier.”

Rare disease patients already go through enough as they navigate a new normal. AllStripes not only makes their medical journey easier but also provides a support system of other rare disease patients, caregivers, and advocates.

By joining AllStripes, Leah is now a part of a community that is there to uplift: “No more people taking advantage, no more people putting you down, no more people saying ‘this is in your head.’”

Although some relationships have taken a toll, Leah has joined alongside some of the bravest, most resilient people we know: the rare disease zebras! She certainly fits right in.

If you are a patient, or family member of a patient, with Myasthenia Gravis and are interested in contributing medical history to advance research, learn more at allstripes.com/mg. Or if you’d like to send a message to Leah as part of the MG community email us at support@allstripes.com.

Originally posted at October 30, 2020

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