Musician copes with rare disease by writing song about it
SCHNECKSVILLE, Pa. (AP) — When Chris Younger was a child, he didn’t understand why he was bowlegged, shorter than everyone else and couldn’t run the bases in Little League as fast as other kids.
He was 18 when he first heard his diagnosis of X-linked hypophosphatemia (XLH), a rare genetic form of rickets that affects muscles and teeth due to loss of phosphate. But doctors in the 1980s had a limited understanding of the disease and its symptoms.
It wasn’t until Younger was in his 40s that he had a breakthrough in understanding XLH, through an online community.
“It was overwhelming, unbelievably overwhelming,” Younger said. “That you’re not crazy. It validates your experience.”
Younger, of Schnecksville, learned that many of his symptoms were due to his genetic disease, an abnormality on the X chromosome. While XLH typically is passed from parents to children on the X chromosome, Younger’s mutation was spontaneous and not inherited.
“That’s when I started reading other people’s stories,” he said. “I’ve had 10 root canals.′ And I’m like, ‘Oh my God, my root canals are a result of the disease.’ I couldn’t believe it.”
People with rare diseases understand that feeling. And on the last day of February each year, attention is turned to the 1 in 20 people worldwide who develop diseases that are not well-known and are under-researched. Rare Disease Day raises awareness of their plight to the public as well as among policy makers and health professionals, as many rare diseases go undiagnosed, according to rarediseaseday.org.
Many people with rare diseases like XLH feel lonely and lost because so few people share their experiences and so few doctors understand their disease. They have to travel hours to find specialists and cross states to meet with others who share the struggle. And sometimes people feel hopeless, Younger said. So he and his wife, Liz, wrote and recorded the song “XLH Strong” to raise spirits and make people feel connected to a community that has their back.
“Weak bones, strong wills / And we keep on keeping on / We have weak bones, strong wills / We are XLHhn strong,” the song goes.
The upbeat anthem on YouTube is part motivational and part educational, explaining the symptoms, advances in medication and the challenges of finding a doctor.
“This was my first attempt to talk about XLH through my music. I didn’t want it to be a bummer song. I wanted it to be uplifting and like a fight song,” Younger said. “Someone who’s maybe going through something is like, ‘Well my life sucks’ and maybe you can put on the song and just get the motivation to get through today.”
Music has long been an outlet for people to unload the frustrations and pains of their illnesses. The hit “Believer,” by Imagine Dragons is about the lead singer’s arthritis; and Avril Lavigne’s album “Head Above Water” has several songs about Lyme disease. “I Can’t Feel” by Yours Truly is about lead singer Mikaila Delgado’s rare disease. She was diagnosed at age 2 with Ehlers-Danlos syndrome, a weakening of the connective tissues that causes loose joints and thin skin.
“This song is really special to me because I’ve always found it hard to explain the way I feel — what other people can’t see,” she told Upset magazine last year. “Putting it in a song allowed me to say the things I’ve wanted to say for the past 21 years.”
Younger turned to music when he couldn’t play sports. It boosted his self-esteem, as he became a skilled guitar player and performed with a semi-professional band.
People with XLH have tough childhoods because of their disease, said Dr. Karl Insogna, an expert in metabolic bone diseases at Yale University and Younger’s doctor.
“You’re a kid, short, bowlegged, bad teeth just as your self-image is developing,” he said. “It’s terribly devastating in terms of self-esteems.”
Even as treatment has developed, some people with XLH are either undiagnosed or struggle to find doctors who understand their disease, Younger and Insogna said.
“I saw a lady living in the middle of Massachusetts who thought she was the only person with XLH,” Insogna said.
For decades, Younger saw doctors who didn’t know how to treat him.
“The primary care doctors say, ‘Take Advils and go home,’” he said.
He learned to be his own advocate.
Once he was able to type XLH into a search bar, he learned about treatments available at Yale University, and later a medication that would help his body retain phosphorus to strengthen his bones.
At 58, he’s felt the best he has in 20 years. But he sees social media posts from others with XLH who are still struggling with such things as access to medication.
“A person shouldn’t have to be mad and frustrated and give up before the medication is actually given,” he reads from a post. “I have given up on my fight. No more trying. If it gets me, it gets me but I have zero fight left. Is this what others experience as well?”
He wants people to hear his song, and feel hope and solidarity, because things are slowly getting better.
More information about X-linked hypophosphatemia and support for people living with the disease are available through the XLH Network website, xlhnetwork.org.
Information from: The Morning Call, http://www.mcall.com