LGMD "Entrevista en primer plano"

Nombre:  Brenda  Edad: 55 años

País: Estados Unidos

Subtipo LGMD: LGMD2A - también conocida como Calpainopatía

 

¿A qué edad le diagnosticaron:

I was diagnosed when I was 50 years old.

¿Cuáles fueron sus primeros síntomas?:

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

¿Tiene otros familiares que padezcan LGMD?

No other family member has LGMD.

¿Cuáles crees que son los mayores retos de vivir con LGMD?:

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

¿Cuál es su mayor logro?:

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.

¿Cómo le ha influido la LGMD para convertirse en la persona que es hoy?

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

¿Qué quiere que el mundo sepa sobre la 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!

Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:

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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