LGMD "Spotlight Röportajı"

İsim:  Karen  Yaş: 54 Yrs. old

Ülke: ABD

LGMD Alt Tipi:  LGMD 2I

 

Kaç yaşında teşhis konuldu?

Bana 33 yaşımda teşhis konuldu.

İlk BELİRTİLERİNİZ nelerdi?

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.

LGMD hastası olan başka aile üyeleriniz var mı?

Hayır, LGMD teşhisi konulan tek aile üyesi benim.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

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.

En büyük başarınız nedir?:

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.

Dünyanın LGMD hakkında ne bilmesini istersiniz??

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.

LGMD hastalığınız yarın "tedavi edilebilseydi", yapmak isteyeceğiniz ilk şey ne olurdu?:

If I was cured tomorrow, I would Rollerblade!

 

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