Lynn resident Elaine Chittick was diagnosed last October with a disease so rare that many medical professionals don’t know what it is.
Her years-long diagnosis of mitochondrial disease, which causes a wide variety of problems in patients whose mitochondria in cells don’t produce enough energy to make cells and organs work correctly, was a lonely process.
But, she said, dealing with the everyday effects of the disease, which can cause extreme fatigue, loss of muscle coordination, muscle weakness and neurological problems, has been even lonelier. The disease manifests itself in Chittick by making her extremely tired.
“I was overly tired; I had no energy; I’d get up to go to do something and then had to sit right back down,” she said.
Chittick wondered if other people on the North Shore were struggling with the same problems. So on Saturday, she hosted a social gathering for people with mitochondrial disease at Christopher’s Cafe in Lynn and, to her delight, more than 20 people attended.
“I want to know I’m not alone and to be able to help people,” she said.
Peabody resident Loree Blanchett brought her 15-year-old daughter, Erica, who was diagnosed with mitochondrial disease at age 10, to the gathering.
Loree Blanchett said living with Mito, as it’s called among patients and their families, is isolating because no one understands what it is, she said.
“So we as the parents and patients are constantly advocating and helping to educate teachers, neighbors, everyone,” she said. “It’s hard when you have this diagnosis handed to you, but when you’re always explaining it, it’s even more difficult.”
Erica Blanchett said she struggles telling her school friends why she’s always tired, battling migraines and can’t keep up with them.
“But people here, they kind of get it,” she said, as she walked into Christopher’s Cafe, pinned on a name tag and sat down at a table with other children to eat pastries. Nearby, her mother chatted with other parents about their families’ experiences.
Chittick, who along with her 17-year-old daughter, Brittany, and husband, Paul, wore “Mito Action” t-shirts, said she wants to raise awareness and funds for the disease in the hopes that one day there will be a cure.
She said her case is hopefully mild, but she knows that others aren’t so lucky. The disease can be fatal, especially among children under 10.
“I would like to help the people who are far worse than I am,” she said.