Steve O?Donnell had just graduated college when he unexpectedly started to lose sensation in his hands and legs. Now, at 45 years old, O?Donnell says it has gotten worse over time.
“It?s harder to do certain physical things,” said O?Donnell, of Roland Park, “The running is tough for me now because it affects my ankles and weakens them. But I can still grip a baseball bat and hit the ball pretty well, or at least I like to think I can.”
He was initially diagnosed with muscular dystrophy, but the real cause was a serious and little-known disease ? Charcot-Marie-Tooth disorder.
“That?s the problem with this disorder,” O?Donnell said. “It can?t kill you and not many people know about it, so we don?t get much funding from the federal government to research [the disorder].”
CMT affects one in 2,500 people, about 2.6 million worldwide, and is the most commonly inherited neurological disorder, according to the CMT Association. Initial symptoms of CMT include constant tripping, clumsiness and burning sensations in the extremities.
Weak ankles and loss of motor skills may follow as it continues to progress.
“CMT affects the hands, fingers, wrists, legs and other parts of the body,” said Lori Garvey, spokeswoman for the CMT Association.
“It can have extreme effects such as muscle loss, decreased sensation in your feet and legs, and your hands tend to become very cold.”
The disorder has no cure, Garvey said, but new treatments from CMTA?s Strategy to Accelerate Research program are expected soon.
The association hopes to find treatments within three to five years, and maybe even a cure within 10 years.
O?Donnell, who sits on the Board of Directors of CMTA, continuously takes time out of his schedule to help raise support for treatment research. Recently, he swam in the Chesapeake Bay in order to raise money to find new therapies.
Scientists have found 33 genes known to relate to CMT development, and researchers are trying to find more.
“They found the genes that cause it,” O?Donnell said. “That?s like finding a needle in a haystack. Now we just have to find the money to get a way to cure this.”
