Events this May!
By Kaila Balch
I never thought I would have to watch my cousin relearn to walk.
He shuffled down the hospital corridor and back, the farthest distance he had walked that month. Half a year prior, in April 2024, my cousin, Brandon Almazan, had been diagnosed with dermatomyositis, a rare multisystemic autoimmune disorder that attacks the skin and muscles. At first his symptoms came in waves. I received pictures of his rashes spreading on his face and hands, then he had open sores, next we were researching anti-MDA5, prednisone, and wound care.
Within five months of his official diagnosis, he was hospitalized with shortness of breath, severe muscle weakness, dysphagia (inability to swallow), and life-threatening congestive heart failure, among a long and growing list. For two-and-a-half months, he remained in the hospital getting one CT scan after another, a list of new meds, a feeding tube, and blood draws, and coasting on deliriously little sleep. Soon, his 29th birthday passed, then Christmas, then New Year’s Eve. As he recovered, he had to relearn how to swallow and walk. And just as quickly as he was admitted he was back home, navigating life on completely different parameters.
Each year, only 1 in 100,000 people are diagnosed with dermatomyositis. While it more commonly occurs in women at midlife, Brandon was diagnosed at the age of 28. Furthermore, he had one of the worst forms of dermatomyositis, testing positive for anti-MDA5, which is often associated with rapidly progressive interstitial lung disease. Every day he lives with this chronic disease, he has to face physical and mental challenges that I cannot fathom. This is why each day I hope is a day closer to finding the cure and shedding light on dermatomyositis and other rare autoimmune disorders.
With my cousin’s consent and support, and in honor of Myositis Awareness Month, I am launching a fundraising campaign with the goal of raising $2,650, one dollar per mile I plan to hike on the Pacific Crest Trail (PCT) over the next five-and-a-half months. The PCT spans the vertical length of the continental US from Mexico to Canada, cutting through California, Oregon and Washington, and I hope to hike all the way through. Along the way, I will work to bring awareness to autoimmune diseases affecting my family, like dermatomyositis, and support the essential research and work being done by The Myositis Association.
Please join me as I share updates on the PCT, and dermatomyositis, here on TMA’s blog, and at my personal Substack, @kailahikes. Through my Substack you can also find links to Brandon’s platforms to learn more about his story through his own words. All proceeds donated here go towards TMA.
