LGMD Sub-Type: Unknown
At what age were you diagnosed:
I was diagnosed when I was 42 yrs. old.
What were your first symptoms:
I did not walk until I was 24 months old. As a child I could not run like others but it was believed at the time to be caused by asthma. I have never been physically strong.
Do you have other family members who have LGMD:
Thankfully, no. I am the only person in my family diagnosed with LGMD.
What do you find to be the greatest challenges in living with LGMD:
One of the greatest challenges is the high cost of aids to keep one going with a reasonably good quality of life.
What is your greatest accomplishment:
My greatest accomplishment is the friendships I have developed.
How has LGMD influenced you into becoming the person you are today:
I believe living with LGMD has taught me patience, organization, empathy for others, and humor.
What do you want the world to know about LGMD:
As my disability has progressed and more help is required to keep me active, I have realized that you cannot be poor and have a good quality of life when you are afflicted with a debilitating condition like LGMD, without a lot of assistance, both financial and physical. Not everyone is as fortunate as I to work a full career and be able to plan for retirement. Please help to find a treatment or cure.
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:
I want to go for a walk along the roads and in the fields and forest around my home community. I have not done that in over 50 years ….. and I miss it. Also, I would like to take my wife dancing; we have not been able to do that since the year we met (1986) and I think she misses it.
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