04/29/2015

Name:  Alicia

Alter:  38 yrs. old

Land: Vereinigte Staaten

LGMD Unter-Typ: LGMD2A / Kalpainopathie

 

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

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

Was waren Ihre ersten Symptome?:

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

Do you have other family members who have LGMD:  No

Was sind für Sie die größten Herausforderungen im Leben mit 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.

Was ist Ihre größte Errungenschaft?:

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.

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

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

Was möchten Sie der Welt über LGMD mitteilen?:

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.

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

Dance all night!