NEW HAVEN, Conn. (WTNH) — Every two weeks, Ed Czaczkes comes to the Yale Center for Clinical Investigation Hospital Research Unit on a 10th floor at Yale New Haven Hospital.
He is getting treated for Myasthenia Gravis or MG.
It just hits you like the more you do, the less you can do. The more you breathe, the less you can breathe. The more you walk, the less you can walk.”
MG is an auto-immune disorder that can be deadly.
It affects how nerves communicate with muscles.
Dr. Richard Nowak, Director of the Yale Myasthenia Gravis Clinic, explains, “There’s a disruption between the communication between the end of the nerve and the surface of the muscle.”
Muscles, that are now susceptible to extreme weakness.
Ed says, “I had severe problems talking and breathing. I thought I had a stroke.”
Mild symptoms can often lead to a misdiagnosis or a delay.
“Early in the morning,” says Dr. Nowak, “an individual can be completely without symptoms as the day goes on they could get a droopy eyelid or double vision or slurring of their words.”
There are a number of treatments available but a clinical trial for a therapy developed by New Haven-based Alexion Pharmaceuticals — is working best for Ed.
Dr. Nowak says, “You’re basically preventing the disruption and destruction of the receptor on the surface of the muscle by targeting this specific component of the immune system.”
So Ed is able to breathe, walk and talk.
“I’m still going,” he says, “I wouldn’t be able to do that if I didn’t have the drugs.”
The goal of researchers like Dr. Nowak, “For every single patient that we see, in our clinical practice and also in the context of a clinical trial, is to get them to be symptom free. That is the gold standard in my opinion and I think that we can achieve that in most, if not all patients.”
MG can strike anybody.
That’s why the annual MG Foundation of America walk is so important. It raises awareness and funding.
Ed Czaczkes will be among those who will be at Hubbard Park in Meriden this Sunday, June 11.
Registration is at nine a.m. The walk starts at 10.
For more information about the MG walk – go to www.mgfa.org