Is there anyone in the east coast(Pennsylvania) that knows how many people affected by mitochrondrial disease/disorders which is maternal. Is there any literature out there. My younger son was affected at about 14 and has the mt (DNA), possible MELAS, only thing is that doesn't fit is that he is about 6'5" not short staute, but doctors had no idea. He was taking a lot high powered medicines for his severe pain in thighs and back, trouble walking. He had trouble functioning in school, and went from a 4.00 down to a 75% grade average. One doctor thought maybe it was Juvenile RA. or fibromyalgia. He ended up on straight pain medicines which allowed him to pull up his grades to 4.00, but caused sides affects. We moved out of the area to the next county closer to Philadelphia. He attends college in area and is pre-med. He has been going for testing about a year and now at the end of it ready to meet with genetics Dr. The doctors there found more clear concrete findings at the Health Systems of U Penn in Philadelphia that could be closer to the problem, in 5 months than the local hospital where we lived in 4 years.
We are all very happy about it and looking for HOPE for future since it is maternal, and I may or may not have symptoms. I seeing dr now regularly for severe Oa, Os, myopathy, nerve pain and MCI/ early dementia in my early 50's, and metabolism which I believe is related. We need more chapters in the east coast and open forums where people can talk about MITO. Some Insurances now recognize this on going disease, affecting all ages. The Mito Foundation has been very helpful and has listed about 2 dozen doctors across the country from 2000. We need to see updates now.