- Brittany Maher-Smythe is detailing her husband Alex’s battle with a rare and progressive autoimmune disease called dermatomyositis
- She is using her platform to raise awareness about the symptoms and the urgency that is required to treat it
- Alex left behind is 1-year-old son when he died
Brittany Maher-Smythe and her husband Alex Smythe were “attached at the hip” when they met in 2015. After marrying in 2020, their son Dylan was born in 2023. But earlier this year, a rare and rapidly progressing autoimmune disease took Alex’s life. Now Brittany is dedicated to raising awareness and helping others avoid the pain of the “unimaginable.”
The 35-year-old — and sister of So You Think You Can Dance alum Tiffany Maher — opened up to PEOPLE about the illness that progressed so quickly, Alex was gone two months after his diagnosis.
Alex started experiencing unusual symptoms in May 2024, Brittany says. It started with a rash on his back and hands, followed by fatigue, muscle soreness and a low-grade fever. The real estate agent, 34, rarely got sick, and when he did, he was always able to keep going. However, Brittany was concerned when she found him unable to get out of bed, prompting a visit to an emergency room near their home in the Miami area.
“Initially he was diagnosed with mononucleosis and possible pneumonia because they saw something on his lung, and he was prescribed antibiotics,” she recalls. “We just focused on rest. The hospital said it was mono, so we thought it was mono.”
Alex’s symptoms persisted. After a few weeks, the family decided to visit a different emergency room for a second opinion. But they were given no answers. In June, a visit with a rheumatologist — who recognized the symptoms immediately — led to Alex finally being diagnosed with dermatomyositis.
Dermatomyositis is a rare autoimmune disease characterized by muscle weakness and painful and itchy rashes — most commonly on the face, eyelids, knuckles, elbows, knees and back, according to the Mayo Clinic. In more severe cases, it can escalate to difficulty swallowing, breathing problems, calcium deposits under the skin and aspiration pneumonia.
Fewer than 5,000 people in the U.S. have this disease. There is no cure, but there are treatments to reduce symptoms.
“You look online and panic a little. I’d never heard of it before and neither have any of our friends and family,” Brittany said. “I started joining support groups as soon as he was diagnosed to learn more about autoimmune diseases. I was calling every doctor I could. I kept fighting for answers because I wanted to make sure he was going to be okay.”
Doctors started treating Alex with prednisone steroids to alleviate symptoms, Brittany recalls. At the time, the rheumatologist also sent his blood work to a lab to get more information on the type of dermatomyositis Alex had.
Unfortunately, the blood panels take three weeks to process.
It wasn’t until mid-July that Alex’s results came back, revealing that he tested positive for MDA5, a subtype of dermatomyositis that can rapidly progress to interstitial lung disease. The National Institutes of Healthreports that the mortality rate for patients with MDA5 dermatomyositis is approximately 50%, with most deaths occurring during the early stages of the illness.
After learning the underlying cause of Alex’s health problems, Brittany and Alex realized it was crucial to see a pulmonologist — a doctor who specializes in lung conditions — immediately.
“As soon as we found that out, we quickly followed up with CT scans and appointments,” Brittany says. “Alex had already been to several dermatologists and rheumatologists, an oncologist, a gastroenterologist, and now was seeing a pulmonologist.”
“But literally within weeks of the MDA5 diagnosis, he was hospitalized. The illness just progressed so fast. We had an appointment with Johns Hopkins on Aug. 22, but he was already hospitalized and couldn’t travel at that point, so we couldn’t make it,” she recalls. “And what’s crazy is that when we made the appointment, they were like, ‘We’re getting you in early.’ Time is literally of the essence for these people and that could save a life.”
“In the support groups, people were saying that it took years to diagnose dermatomyositis, and we got a diagnosis in a little over a month. I felt like we were ahead of it… and we weren’t. It’s devastating.”
Alex’s condition continued to worsen. He died on Aug. 30, 2024.
“Alex was the love of my life, my best friend, and it’s just heartbreaking. He always made us laugh. We need him really bad right now,” Brittany says, as she starts to cry. “He faced it with such incredible courage and I’m proud of him for fighting hard and being so strong.”
“I had hoped that he was going to be one of the people that got out and was going to help others. I just saw it that way,” she continues. “I just didn’t ever think that this was going to happen.”
Despite the loss, Brittany — a former elementary school teacher of 11 years — says that her husband’s legacy lives on in Dylan, who is now 19 months old. Her sister Tiffany has since created a GoFundMe page on her behalf to help ease the financial burden as she “cares for her son and heals from the tragic loss.”
Brittany tells PEOPLE that she hopes sharing her husband’s health battle will raise awareness of dermatomyositis and how urgent it is to get to a doctor before it’s too late. She wants “something of meaning to come out of this unthinkable loss.”
“I wanted to raise awareness so others could recognize the symptoms of dermatomyositis early on,” she stresses. “Alex was only 34, so healthy and athletic, and it all happened so fast. Knowing the early signs might help others.”
“Just how everyone is aware of cancer, I want more people to know that this disease exists,” Brittany says.
