04/29/2015

Nombre:  Alicia

Edad:  38 yrs. old

País: Estados Unidos

Subtipo LGMD: LGMD2A / Calpainopathy

 

¿A qué edad le diagnosticaron:

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

¿Cuáles fueron sus primeros síntomas?:

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

Do you have other family members who have LGMD:  No

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

¿Cuál es su mayor logro?:

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.

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

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

¿Qué quiere que el mundo sepa sobre la 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 su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:

Dance all night!