LGMD "Spotlight Interview"

Имя:  Karen  Возраст: 54 Yrs. old

Страна: США

LGMD Подтип:  LGMD 2I

 

В каком возрасте вам поставили диагноз?

Диагноз мне поставили в возрасте 33 лет.

Каковы были ваши первые симптомы?

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.

Есть ли у вас другие члены семьи, страдающие LGMD?

Нет, я единственный член семьи с диагнозом LGMD.

Что, по вашему мнению, является наибольшей проблемой в жизни с LGMD:

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.

Какое ваше самое большое достижение:

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.

Что вы хотите, чтобы мир узнал о LGMD?

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.

Если бы ваш LGMD можно было "вылечить" завтра, что бы вы хотели сделать в первую очередь:

If I was cured tomorrow, I would Rollerblade!

 

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