At times it may seem like you’re the only unfortunate person to be fighting a rare autoimmune disease. And it’s true that Myasthenia gravis only affects between 14 and 40 in 100,000 people. You don’t have a very high chance at stumbling upon someone living with the disease, just randomly on the street. And unlike some other conditions, MG is not widely represented in the media either.

However, MG can affect anyone. We at FindMeCure want you to have some sense of representation, so today we talk about 7 people in the spotlight who share your diagnosis. Some of them struggled with the disease for years in a time when treatment wasn’t as effective, others eventually achieved a long-lasting remission. Some used their diagnosis to spread awareness and others had to retire from their careers due to health complications. What they all have in common is their perseverance in the face of adversity and we hope you feel inspired to keep on fighting after reading their stories.

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Suzanne Rogers

Famous for the role of Maggie Horton on NBC’s Days of Our Lives, Suzanne Rogers, born Suzanne Crumpler, was diagnosed with myasthenia gravis at age 39. MG reportedly affected her facial muscles – a devastating symptom for an actress. Suzanne was put on medication that made her feel increasingly ill. Not only that but her facial expression changed as a result and she also suffered hair loss.

After 11 years on the show, Suzanne took a year off to take care of herself and recover. When she returned to her role, she didn’t look the same – MG had altered her appearance. With no way around it and the intention to represent this rare condition, Suzanne had the writers write her disease into the show. For her, playing Maggie Horton as someone who also had MG was a matter of raising awareness. Since 1995 Suzanne has been in remission and now, at age 75 she’s the longest-running actress on the show.

We feel inspired by Suzanne Rogers’ journey because she made lemonade out of the lemons she’d been given. Not only did she turn her MG into a focal point in her character’s storyline but she also used her position of fame to spread awareness about the rare disease and make patients feel represented.

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Aristotle Onassis

Jackie Kennedy’s second husband and Maria Callas’ one true love whose death she never recovered from, Aristotle was a Greek shipping magnate, one of the richest and most influential men of his time. Nothing much is known about his battle with myasthenia gravis, including the timing of his diagnosis.

There are reports of him suffering from both influenza and MG at the same time – a very high-risk combination. However, as a cause of death for the billionaire who died at age 69 is often cited respiratory failure – a side effect of his MG. Onassis died in the American hospital in Paris and Maria Callas never stopped grieving him.

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Laurence Olivier

Snatching every award for acting imaginable, Sir Laurence Olivier both acted in and directed some of the most emblematic movies of the 20th century. Reportedly, Olivier suffered from the disease for the last 22 years of his life, dying of renal failure at age 82.

The last 15 years of his life he spent taking care of his health and his affairs, only taking cameo roles because of his condition. It’s important to note that MG was one of many conditions that were responsible for his deteriorating health, prostate cancer reported to be among them.

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Christopher Robin Milne

Son of beloved author A.A. Milne, Christopher Robin was the inspiration behind the character of Christopher Robin in his father’s books about Winnie the Pooh. Christopher studied English literature after he failed the medical examination and couldn’t be an active participant in World War II. It’s unclear whether he had early MG symptoms but it is known that he suffered from the disease for years. Eventually, Milne died a natural death in his sleep at the age of 75.

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James Carter

American athlete and 2005 Olympic champion James Carter wasn’t always the 15th fastest man in the world. Although he started competing at a very young age, MG didn’t stop to ask if the time was convenient. Diagnosed with myasthenia gravis at the age of 12, he became unable to participate in sport. James couldn’t run due to his disease, but he also couldn’t walk or perform other everyday tasks.

After doctors found a tumor on his thymus and he had to undergo a thymectomy, his symptoms significantly improved. The procedure, however, is now thought to also be beneficial for MG patients who don’t develop tumors – recent studies show it can improve prognosis and slow down the course of the disease. James Carter is now in remission.

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Stephen Garrett

Known as Static Major, Stephen was an award-winning hip hop artist who worked with big names like Aaliyah, Destiny’s Child and Lil Wayne. At age 33 Stephen was diagnosed with MG after being rushed to the hospital by his wife Avonti who woke up in the middle of the night, alerted by his labored breathing. Stephen had begun showing signs of the disease earlier when his speech got slurred – a prominent symptom of MG.

After multiple tests, doctors finally came to a diagnosis. The same night they would perform a procedure called plasmapheresis – similar to dialysis – to clear the toxins from his blood. Surgery was scheduled for the next day. However, Stephen, who already had fear of hospitals, wasn’t convinced this was the best course of action.

Sadly, Stephen Garrett died that night due to procedure-related complications. A year later his family filed a lawsuit against the hospital.

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Wilma Pearl Mankiller

The first woman elected as Principal Chief of the Cherokee Nation, Wilma was a social activist and a social worker, invested in improving children’s living situation. In her time as an activist, she was dedicated to helping rural citizens and improving the standing of Native Americans.

Wilma Mankiller was honored with many awards among which the Presidential Medal of Freedom. In her 64 years on this Earth, Wilma achieves impressive results both in her political career and in her activism, all the while fighting multiple health issues, myasthenia gravis only being one of them. Mankiller died in 2010 from one of the many serious diseases she was battling at the time – pancreatic cancer.

 If you are interested in exploring innovative treatment options for your loved one, make sure you find out more about the ongoing research studies near you and how to access them.

1 Comment

  1. My name is Kayla Dewberry. My doctors have encouraged me to share and write my rare Myathenia Gravis strory. I have been trying to reach Suzanne Rogers. I know she would want to hear my story. I do not know how to reach her so I am asking for any help.

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