My name is Chris and my husband was diagnosed with OPMD about 3 years ago.
I tried to find something like this in Holland but nothing to be found .
I hope to learn and listen to others on here so i can help my husband when and where needed. I am very proud how he takes everything in his stride while dealing with opmd .
Jacob & Chris
Welcome to Ben’s Friends
It’s great to see that you are trying to keep yourself informed. Any type of dystrophy can be a huge challenge for all involved and not just the patient. The more information you have the better armed you can be to deal with those challenges. Are your husband’s symptoms stable or are they progressing? It seems there can be a lot of variability between individuals with OPMD and their symptoms.
Merl from the Modsupport Team
Thank you for your reply,
At the moment my husband is stable ,the only
operation coming up is an eye op (again)
He has lost a fair amount of musclemass over the last 3 years.
I have also noticed that his resistance is lower and it takes him longer to recover . Anybody else noticed this ?