LGMD Spotlight interview – 09/02/2016

 

Nombre:  Melanie  Edad:  29 yrs. old

País:   Germany

Subtipo LGMD :  LGMD2i (heterozygous type)

 

¿A qué edad le diagnosticaron:

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

¿Cuáles fueron sus primeros síntomas?:

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.

¿Tiene otros familiares que padezcan LGMD?

No, soy el único de mi familia con LGMD.

¿Cuáles crees que son los mayores retos de vivir con 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!

¿Cuál es su mayor logro?:

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.

¿Cómo le ha influido la LGMD para convertirse en la persona que es hoy?

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!

¿Qué quiere que el mundo sepa sobre la 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.

Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:

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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