LGMD "스포트라이트 인터뷰"

이름:  Brenda  나이:  55 yrs. old

국가: 미국

LGMD 하위 유형: LGMD2A - 칼파인 병증이라고도 함

 

몇 살에 진단받으셨나요?:

I was diagnosed when I was 50 years old.

첫 증상은 무엇이었나요?:

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

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

No other family member has LGMD.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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

가장 큰 성과는 무엇인가요?:

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.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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

LGMD에 대해 전 세계에 알리고 싶은 내용:

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!

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?:

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.

더 많은 'LGMD 스포트라이트 인터뷰'를 읽거나 다음 인터뷰에 출연을 신청하려면 다음 웹사이트를 방문하세요: https://www.lgmd-info.org/spotlight-interviews