ИНДИВИДУАЛ С ЛГМД: Мелани

LGMD Spotlight interview – 09/02/2016

 

Имя:  Melanie  Возраст:  29 yrs. oldLGMD2i - Melanie B

Страна:   Germany

LGMD Подтип :  LGMD2i (heterozygous type)

 

В каком возрасте вам был поставлен диагноз:

I was diagnosed at the age of 4 by having a muscle biopsy.

Каковы были ваши первые симптомы:

I always fell when I tried to run and to take the stairs.  This resulted in many bruises and scars!  In addition, I couldn’t get up from the floor by myself.   These symptoms already showed up around the age of 2.

Есть ли у вас другие члены семьи, страдающие LGMD:

Нет, в моей семье только у меня LGMD.

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

The greatest challenge is to make people understand that I’m not too lazy to do everyday tasks but I am too weak to do them on my own.  Another challenge for many of us is accepting a wheelchair as your best friend!

Какое ваше самое большое достижение:

There are far too many accomplishments!  Living a good life with LGMD is an accomplishment in itself!  On my blog (www.littlemissturtle.com) I write about all of my accomplishments and adventures on wheels.

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

I grew up with LGMD.  It made me a very strong person.  Dealing with a progressive disease that causes muscle weakness and atrophy while being fully conscious  about it is a demanding challenge  I appreciate every day of my life!   I stopped working recently to have more time to do all the things I love.  LGMD taught me to take things the easy way.  Enjoy more, worry less, stay positive and spend as much time as possible with loved ones.  That’s my way!

Что вы хотите, чтобы мир узнал о LGMD:

LGMD is a rare and tricky disease.  It cannot be compared to any other disease like Multiple Sclerosis (MS), etc.  It is important to fully listen to a person who has LGMD when he or she asks for assistance – to avoid hurting him or her in the process.

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

I would get up from the bed by myself, dress and then go for the walk of my life!  I would walk for as long as my feet would carry me.

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