LGMD Spotlight interview – 09/02/2016

 

Name:  Melanie  Age:  29 yrs. old

Country:   Germany

LGMD Sub-Type :  LGMD2i (heterozygous type)

 

At what age were you diagnosed:

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

What were your first symptoms:

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.

Do you have other family members who have LGMD:

No, I am the only one in my family with LGMD.

What do you find to be the greatest challenges in living with 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!

What is your greatest accomplishment:

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.

How has LGMD influenced you into becoming the person you are today:

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!

What do you want the world to know about 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.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

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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