LGMD "스포트라이트 인터뷰"

이름:  Karen  나이: 54 Yrs. old

국가: 미국

LGMD 하위 유형:  LGMD 2I

 

몇 살에 진단을 받았나요?

저는 33살에 진단을 받았습니다.

첫 증상은 어떤 것이었나요?

My first symptom was an overall weakness compared to other kids in gym class in grade school.  High School gym class was even worse.  I experienced tight hamstring and calf muscles.  My calves were large. Next was the noticeable change in my gait.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

No, I am the only family member diagnosed with LGMD.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

The greatest challenges of living with LGMD are completing daily personal and household tasks, managing activity and rest, being prepared to access public spaces, and planning for future needs.

가장 큰 성과는 무엇인가요?:

With the love and support of my family and friends, I embrace and experience life in spite of ever changing limitations and obstacles.  That is my greatest accomplishment.

How has LGMD influenced you into becoming the person you are TODAY?

Living with LGMD has formed me into an accepting, determined, resourceful, humble, and grateful person. I learned to accept my diagnosis and realize that, as it progresses, it provides me with the opportunity to grow as a person.

LGMD에 대해 전 세계에 알리고 싶은 내용?

LGMD is a progressive disease.  It affects every thought that goes into every motion of every day.  Continued research and development for a cure, treatment, and assistive devices are essential.

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

If I was cured tomorrow, I would Rollerblade!

 

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