LGMD "Spotlight Interview"

Имя:  Keisha  Возраст: 31 yrs. old

Страна: Соединенные Штаты

LGMD Подтип : Unknown

 

В каком возрасте вам был поставлен диагноз:

I was diagnosed about 5 years ago at the age of 25-26.

Каковы были ваши первые симптомы:

I noticed that I was repeatedly falling and that my leg would give out without any warning.  I also recall that I was unable to raise my right arm unless I had assistance.

Есть ли у вас другие члены семьи, страдающие LGMD:

So far, no one in my family has muscular dystrophy but I plan to have my parents tested to see if they are carriers.

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

One of the greatest challenges is always having to plan ahead – if going out with friends or family to make sure the place is handicapped accessible.  Every day it also takes me longer to get dressed in the morning.

Какое ваше самое большое достижение:

Coming to the fact that I have LGMD and still trying to figure out which form of LGMD.  And learning to embrace it.

Как LGMD повлиял на то, что вы стали тем человеком, которым являетесь сегодня:

I feel LGMD has made me an unique individual helped me to bring awareness of the disease to others that don’t know much about it.  Having LGMD has helped me to become stronger and more independent.  I know that having LGMD is a part of me, I am human and still have my days just like anyone else.  I am a strong and proud woman with LGMD.

Что вы хотите, чтобы мир узнал о LGMD:

LGMD is something that currently has no cure.  It is something that won’t go away.  Physical therapy and aquatic therapy help manage the disease.  Even with LGMD, we are still strong and can live a normal life just like anyone else.

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

If I could be cured tomorrow, I would want to run a marathon, run up and down the stairs, and take a big vacation somewhere to celebrate!

 

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