Growing up with a rare disease like Duchenne muscular dystrophy (DMD) was a lonely experience at times. I was really shy when I was younger and didn’t have the most dynamic group of friends. That’s why having an older sister meant so much to me then and still does to this day.
Recently, I became intrigued by the idea of talking to someone who had a sibling connection similar to mine. Through Instagram, I met Katie Kilgore—a 27-year-old from Moorpark, California—who has a younger brother by 18 months, Andy, living with DMD.
“We’re pretty close, and we’ve bonded a lot over video games, music, and movies,” Kilgore said. “We’d fight like siblings do, but I’ve always felt really protective of him. If someone would pick on him at school I’d tell them off.”
Understandably, DMD has also taken a bit of a toll on Andy’s socialization abilities.
“My brother had a good group of friends, but as he started getting older he couldn’t do the same things,” Kilgore said. “It’s been hard for me to see when people don’t stay in touch with him. He has a couple of friends that he hears from time to time, but he mostly hangs out with me, our family, and my boyfriend.”
Read about HCP resources for DMD
Often, DMD can become generational since there’s a significant chance the mother who is carrying the genetic mutation can pass it down to the typically male offspring. Females born will in many cases be a carrier themselves. Kilgore says she had an uncle who lived with the disease.
A “manifesting carrier” can also have symptoms associated with the disease such as heart function abnormalities, muscle weakness or cramps, and fatigue. Rarely these can become severe. Kilgore says her mother has had heart-related problems and that the prospect of having them herself has made her hesitant to get tests run to diagnose such issues.
Kilgore and her mother have actively been involved with various advocacy efforts for DMD. This includes a running event her mom participated in at Anaheim’s Disneyland. It was hosted by the DMD nonprofit Parent Project Muscular Dystrophy (PPMD).
“My whole family would go, and it was a nice way for me to meet siblings who also have a sibling with Duchenne,” Kilgore said.
In 2015, the two of them attended a conference where they lobbied for approval of a proposed drug to treat DMD. Approval was ultimately denied. This and other challenges the disease can pose for a family have been difficult for Kilgore. “My mom handles things really well, but I feel like I get emotional about that stuff,” Kilgore said. What DMD throws at families impacted by it can certainly be a strain, but it is possible to have aspects of a ‘normal’ life.”
In college, Katie earned an art degree. This turned out to be an effective way for her and Andy to stay close. “Me and my brother bond over art,” she said. “We like to draw, and he is really talented.”
Andy enjoys making use of his drawing skills with his iPad. He has an Instagram page full of anime-style works. Additionally, he is often playing the latest video games and beating them on the hardest difficulties. He has had an interest in cooking too.
Hearing this family’s story reminds me of the perspective I’ve taken about my life with DMD. I was able to go to college and find some writing jobs because that suited my situation well. However, at this point, with all the uncertainty my condition brings, I have found that what matters most is that I enjoy whatever time I have. I’ve met others with DMD like Andy who didn’t follow a path similar to mine, and that’s perfectly fine.
The Kilgores’ story also demonstrates how vital a family is when a member of it has a notable medical condition. Friends can be hard to come by in these circumstances. When you have a sibling, especially around your age, I feel that can alleviate at least some of the loneliness a rare disease will likely cause.