Tom’s story

A Marine Corps Veteran with gMG Finds a New Beginning

Tom Hopkins served with the Marine Corps in Vietnam as a young man. However, he faced the toughest battle of his life in the summer of 2020 shortly after he turned 80. Fatigue and weakness caused by a rare autoimmune disorder called anti-acetylcholine receptor (anti-AChR) antibody positive generalized myasthenia gravis (gMG) left him with debilitating symptoms.

But in June of 2022, Tom experienced a positive transformation. He took back some control of his life, and he’s now able to keep up with his grandkids. “I am able to enjoy my life once again, enjoy the little things,” said Tom, and his family is pleased to see his symptom improvement which allows him to be more present in their daily lives.

Living with Generalized Myasthenia Gravis

After Tom served in Vietnam and retired from the Marine Corps, he lived his version of the American dream, building a successful career in the insurance industry. In his early sixties, Tom was getting ready for a well-deserved retirement. But his outlook changed in 2003, when he was diagnosed with anti-AChR gMG.

gMG is unpredictable, and everyone’s experience is unique. Tom and his family were able to manage his symptoms for almost 20 years. Then, suddenly, in the summer of 2020, Tom’s life took a sudden turn for the worse. In a matter of months, Tom went from spending time with his grandkids to feeling depressed and very sick.

“I had a hard time eating,” said Tom. “It was difficult to swallow and breathe. I had double vision and felt extremely fatigued. I couldn’t make it through a shower without needing rest, and I had to take breaks on the way back from going to the bathroom. On top of that, I lost over 30 pounds over an 18-month period.”

“My life became extremely small.”

“My life became extremely small,” Tom recalls of that period when his gMG symptoms put him on the sidelines. Tom had to give up his usual routine and activities, like volunteering, going to veteran meet ups, even joining in family meals or calling his daughter. “We couldn’t have a conversation,” said his daughter due to impairment of his speech as a result of worsening symptoms.

What is Generalized Myasthenia Gravis?

According to the Myasthenia Gravis Foundation of America, generalized myasthenia gravis is a rare and often debilitating autoimmune disorder that leads to severe muscle weakness, including difficulty speaking, swallowing, and eventually even breathing. Roughly 50,000 Americans live with gMG, and the most common gMG serotype is anti-AChR antibody positive gMG which accounts for about ~85% of all diagnoses.

Adding VYVGART^®

After declining over 18 months, Tom and his family saw a brochure about a medicine called VYVGART^® (efgartigimod alfa-fcab). VYVGART is approved in the U.S. for the treatment of generalized myasthenia gravis (gMG) in adult patients who are anti-AChR antibody positive. Before receiving treatment, Tom’s condition was severely limiting his daily life, and he was unable to do the things he loves. In June of 2022, Tom started feeling some improvements after his first cycle with VYVGART paired with his other gMG treatment.

Tom’s decision to take VYVGART came after consulting with his doctor. They advised that the most common side effects of VYVGART are respiratory tract infection, headache, and urinary tract infection. While Tom did not experience any side effects, individual results vary.

“Now that my gMG symptoms are being treated, I am able to get back to doing more of my daily activities – seeing my grandchildren’s volleyball matches and playing with them again means the world to me,” said Tom.

With VYVGART treatment, Tom has happily returned to some of his independent activities, like taking daily walks and drives. He also started to enjoy food again, and rejoined his wife at the dinner table for family meals. Over the holidays, Tom was able to celebrate with extended family members.

Now that Tom is able to better manage his symptoms, he’s gained enough strength to be more like himself again. Tom loves spending time with his grandchildren and watching them play sports. Around Veteran’s Day, he speaks to local schools about his experiences in the Vietnam War.

Tom and his wife recently celebrated their 60th wedding anniversary, still very much in love. Thanks to his improved symptoms, Tom is making the most of his golden years despite the effects of gMG.