LGMD Spotlight interview – 09/02/2016

 

Name:  Melanie  Alter:  29 yrs. old

Land:   Germany

LGMD Unter-Typ :  LGMD2i (heterozygous type)

 

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

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

Was waren Ihre ersten Symptome?:

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.

Haben Sie andere Familienmitglieder, die LGMD haben?

Nein, ich bin der einzige in meiner Familie mit LGMD.

Was sind für Sie die größten Herausforderungen im Leben mit 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!

Was ist Ihre größte Errungenschaft?:

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.

Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?

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!

Was möchten Sie der Welt über LGMD mitteilen?:

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.

Wenn Ihre LGMD morgen "geheilt" werden könnte, was würden Sie als Erstes tun wollen?:

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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