04/29/2015

Nom :  Alicia

L'âge:  38 yrs. old

Pays: États-Unis

LGMD Sous-type: LGMD2A / Calpaïnopathie

 

À quel âge avez-vous été diagnostiqué ?:

I was diagnosed at age 35 after years & years of being misdiagnosed.

Quels ont été vos premiers symptômes ?:

Walking & running on my toes and climbing stairs were the first symptoms.

Do you have other family members who have LGMD:  No

Quels sont, selon vous, les plus grands défis à relever pour vivre avec le LGMD ?:

One of the biggest challenges for me has been finding physicians who are educated when it comes to LGMD and the challenges & symptoms that come along with the disease.  Many doctors didn’t take my issues seriously (muscle pains, loss in strength, problems walking/stairs) or thought I had an autoimmune disease before I found a doctor that finally sent me to the Mayo Clinic. After an EMG, blood tests & a muscle biopsy I was finally diagnosed but it took many years and many doctors to get where I am at.

Quelle est votre plus grande réussite ?:

Raising two amazing daughters with my husband of 14years has been an accomplishment and a blessing. Teaching them kindness and to be more empathetic towards people since we never really know the struggles of those around us.

Comment le LGMD vous a-t-il influencé pour que vous deveniez la personne que vous êtes aujourd'hui ?  

It has taught be to be kinder, listen more and laugh every day.  Sometimes all you can do is laugh.

Que voulez-vous que le monde sache sur le LGMD ?:

That there are currently no treatments or cure for LGMD and if you have a family member or even a friend who has been diagnosed please educate yourself about the disease.  It could mean the world to someone.

Si votre LGMD pouvait être "guérie" demain, quelle serait la première chose que vous souhaiteriez faire ?:

Dance all night!