INDIVIDUAL WITH LGMD: Rebecca

04/30/2016  LGMD "Spotlight Interview"

 

ИМЯ:  Rebecca    ВОЗРАСТ: 29 летLGMD2A - Becc

СТРАНА:  Australia

LGMD Подтип:   LGMD2A / Calpainopathy

 

В каком возрасте вам был поставлен диагноз:

I was diagnosed with LGMD2A when I was 26 years old.

Каковы были ваши первые симптомы:

My first symptoms included:  difficult climbing stairs and inclines as well as not being able to rise without using my hands to me up.

Есть ли у вас другие члены семьи, страдающие LGMD:

I am the only one out of 4.

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

The greatest challenge for me is battling fatigue.  It can become really hard to find a balance between doing too much and not doing enough.  I have found that I’m adapting to change basically every year.  It is also a challenge to not be so hard on myself when I see others doing activities which I can’t do.  It can be challenging to ask for help when I cannot fulfill a task on my own.  Pain – I can’t remember the last time that I woke up and felt no pain, discomfort and feeling fragile.

Какое ваше самое большое достижение:

My daughter is 10 years old and she is my greatest accomplishment.  I might not be good at some things in life but I can honestly say I’m the best Mum!  She is my life.  And, as she is growing up, she is starting to look after me in more ways than one.

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

I might be becoming physically weaker in my body but I have become stronger mentally.

Что вы хотите, чтобы мир узнал о LGMD:

That is strips away everything that you know.

I also want them to know about Coalition to Cure Calpain 3 – the organization focused on finding a cure and treatment for LGMD2A.

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

If I was “cured” tomorrow, I would go out with my family with not limits.  I would run around with my daughter and climb 100 stairs.

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