LGMD “Spotlight Interview”
Country: United States
LGMD Sub-Type: LGMD2A – also known as Calpainopathy
At what age were you diagnosed:
I was diagnosed when I was 50 years old.
What were your first symptoms:
My first symptoms included: falling, wrist drop, an unusual gait when walking with my hips out in front, leg cramps and rapid weight loss.
Do you have other family members who have LGMD:
No other family member has LGMD.
What do you find to be the greatest challenges in living with LGMD:
The greatest challenge in living with LGMD is that I look normal and the disease if forever.
What is your greatest accomplishment:
Some of my greatest accomplishments include: skiing the Alps, sea-kayaking the Atlantic coast, sea-kayaking Lake Champlain, and rollerblading the State of Vermont. In addition, raising a healthy 17 year old daughter and being married for 25 years to an exceptional husband who loves me dearly no matter what! I have also maintained a job as the Recreation Director of Vermont’s only 5-Star Resort for 22 years.
How has LGMD influenced you into becoming the person you are today:
I have a positive attitude and stay healthy and happy no matter what.
What do you want the world to know about LGMD:
I want to tell everyone that I am still the same Brenda who use to dance every chance I got and do cartwheels and backbends on the sandy beach at Gay Head Cliffs in Martha’s Vineyard. The one who was first to get up slalom on water skis, the first to downhill, cross-country and telemark ski and first to ski the alps in Europe. First to ski the headwall at Mt. Washington, Tuckerman’s Ravine. The one to ski all the black & double black diamond trails at Killington ski Resort in Vermont including all the wood’s trails for 30 years. I will never let this disease label me or bring me to a bed ridden state. Dr. Anthony Amato said “Good Long Life” ahead at 50 when I was diagnosed. I want to let the world know that someone with a disability is just like you!
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:
Dance with my husband without fatigue. Ski the powder trails with perfect turns. Walk on a sandy beach without fatigue. Hike at a good pace again with no joint pain or wrist drop. Bike with the ladies rides and be able to keep up. Fat tire bike on the snow.
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