NAME: Annette AGE: 40-50 yrs old
LGMD Sub-Type: LGMD2B
At what age were you diagnosed:
I was diagnosed at the age of 38 yrs. old
What were your first symptoms:
I was stumbling and falling. I also had problems rising from a seated position and climbing stairs.
Do you have other family members who have LGMD:
No, I am the only person in my family with this diagnosis.
What do you find to be the greatest challenges in living with LGMD:
Lack of awareness is prevalent. In addition, many facilities in Dublin (transport, restaurants, some theaters) are not anywhere near wheelchair accessible.
LGMD has impacted my professional life as I am no longer able to work full time and there have been financial consequences of this.
What is your greatest accomplishment:
I try to remain positive and optimistic. I am fortunate that I am able to maintain an almost independent life. I am delighted to be taking part in a clinical outcome study in Newcastle, UK (the people there are wonderful).
How has LGMD influenced you into becoming the person you are today:
I appreciate what I can do and try not to get downhearted regarding the things that are no longer possible.
What do you want the world to know about LGMD:
I am blessed with a wonderful family and core group of friends who never let me down.
LGMD is a challenge but with a good support system in place, life can be good. Greater funding allocations are imperative in order for LGMD to be treated and not be a life altering condition.
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:
I would play with my beloved niece Emily, bring her to the park and do all the things a good auntie should do.
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