LGMD “Spotlight Interview”

Name:  Brenda  Alter: 55 Jahre alt

Land: Vereinigte Staaten

LGMD Unter-Typ: LGMD2A - auch bekannt als Calpainopathie

 

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

I was diagnosed when I was 50 years old.

Was waren Ihre ersten Symptome?:

My first symptoms included:  falling, wrist drop, an unusual gait when walking with my hips out in front, leg cramps and rapid weight loss.

Haben Sie andere Familienmitglieder, die LGMD haben?

No other family member has LGMD.

Was sind für Sie die größten Herausforderungen im Leben mit LGMD?:

The greatest challenge in living with LGMD is that I look normal and the disease if forever.

Was ist Ihre größte Errungenschaft?:

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.

Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?

I have a positive attitude and stay healthy and happy no matter what.

Was möchten Sie der Welt über LGMD mitteilen?:

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!

Wenn Ihre LGMD morgen "geheilt" werden könnte, was würden Sie als Erstes tun wollen?:

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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