Walk to raise awareness about mitochondrial disease returns to Hinsdale
HINSDALE – Imagine your body as a factory and its mitochondria is the assembly line.
As food and oxygen make their way down the assembly line, workers (or cells) process those nutrients into energy the body needs. Now if that assembly line fails, so to can the body. It’s a problem that affects thousands of people in the form of mitochondrial disease.
“It’s a very tragic disease and there’s very little awareness about it,” said Gary Moberly of Hinsdale, whose 18-year-old daughter was diagnosed with the disease eight years ago.
The effort to raise awareness continues Sept. 15 in Hinsdale when the United Mitochondrial Disease Foundation (UMDF) will once again host an “Energy for Life Walkathon” at Katherine Legge Memorial Park. All proceeds raised from the walk will help UMDF provide support, education and research toward a cure for mitochondrial disease.
Each person’s case is different, but some symptoms can include loss of motor control, muscle weakness and pain, cardiac and liver disease, diabetes, seizures, visual and hearing problems and poor growth.
There is no cure for mitochondrial disease and it’s often fatal.
“It should be a household name because we have found that the link between diabetes, ALS, Alzheimer’s, Parkinson’s, MS, is a defect in your mitochondria,” said Cherie Lawson, acting president of the UMDF Chicago chapter. “If we could find a cure for mitochondrial disease we could probably be able to cure all of those.”
Lawson said symptoms of mitochondrial disease do not have to be evident at a young age, which was true for her son who did not receive a definitive diagnosis of mitochondrial disease until he was 13.
“We’ve experienced symptoms with him since he was 2 months,” Lawson said. “At 3 years old he presented more and at 7 he had his first stroke.”
At 16 years old, Lawson said her son lost a majority of his vision due to another stroke.
“He is legally blind now,” she said.
The now 20-year-old is on anti-seizure medicine and takes vitamin supplements to help treat his symptoms.
Moberly said part of the problem with raising awareness about the disease is how relatively new it is in that doctors didn’t know what it was until the 1970s because of the complications with understanding DNA and coding.
When he brought his daughter to Adventist Hinsdale Hospital eight years ago after she got sick, doctors thought it might be meningitis, a tumor or a stroke and ran through a series of tests before performing a muscle biopsy and giving a definitive diagnosis.
“I believe they’re just finding out all the different forms of mitochondria,” Moberly said. “Usually when I say mitochondrial disease nobody knows what I’m talking about.”
Lawson said the organization raised $65,000 from last year’s Energy for Life Walkathon at Katherine Legge, and she hopes to exceed that amount this year.
There is also a support group that meets monthly at the Oak Brook Public Library in the conference room. For more information and to find event details, visit umdf.org.