Good morning everyone,
i am new to this site and very happy to stumble across it and become a new member,although im not quite sure how to use this site i will give it a try
.Does anyone out there have the rare muscular dystrophy called scapulo peroneal muscular dystrophy?
Hello,
I happen to have scapulo or scapula peroneal MD. In fact the research that was done tracked our family back to Canada where it was determined where the disease originated many generations ago. So there's a small group of my family members who have the disease. I'd love to discuss this more with you. Feel free to message me back.
Michael
Hello,
I happen to have scapulo or scapula peroneal MD. In fact the research that was done tracked our family back to Canada where it was determined where the disease originated many generations ago. So there's a small group of my family members who have the disease. I'd love to discuss this more with you. Feel free to message me back.
Michael
HI there,
thanks for the reply back,i was so happy to read this..i am brand new at this site and i got the reply in my e mail and tried to go on the site and couldnt and then lost my password and its taken me till now to request a new password..Anyhow not sure if this will work or get to you but i will give it a go.i have scapulao peroneal muscular dystrophy since i was about 10 years old. i was diagnosed with it at hamilton mc master hospital .Can you tell me more of your story please,i would love to hear more from you about it and its so nice to find someone else out there with it because it is so rare and hard to find info too.Awaiting your reply,thank you ))))) p.s/ bear with me while i figure this site out to.if you dont hear back from me,it may be that im struggling to find my way back to this message,but i will give it my best shot and hope for the best.....
Anyway, I guess I've had scapulao peroneal my whole life. At age 7 months I had a tracheostompy because of my paralized vocal chords made breathing very difficult. Other than that I grew up a pretty happy, healthy kid. I tried keeping up with the other kids and was never without a quick wisecrack or dirty joke. I still played baseball and was in the Boy Scouts, played the drums and dreampt of having my own rock band. I got into a lot of mischieve with my 5 brothers and sisters and the hoards of school friends.
Looking back, the 'family'disease " was never talked about because no one knew anything about it I had several cousins who were disabled and a younger brother with a lesser form. That's just how it was.
The disease started to slowly progress in my late teens when I started having difficulty climbing stairs. I went to college, worked for a Boston consulting company, traveled, partied with friends and didn't let the disease slow me down.
Eventually and sadly enough walking became difficult. I started with a cane, then a walker to a wheelchair. Because of many bouts with pneumonia breathing became difficult so I was put on a ventilator. That was in 1997.
Fast forward to 2013. I'm am completely dependent of others to care for me. We now know a lot more about the disease and there's always hope they'll be a cure. I still feel like the same wisecracking kid with the dirty jokes. That's the one thing this horrible disease hasn't taken from me.
I promise to get this site frequently and to to hear from you soon.
-Michael
scapulo peroneal muscular dystrophy 
))))) p.s/ bear with me while i figure this site out to.if you dont hear back from me,it may be that im struggling to find my way back to this message,but i will give it my best shot and hope for the best.....
