12/10/2015

NAME:  Michal   AGE: 35 yrs. old

LAND: Poland

LGMD Unter-Typ: Unknown

 

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

I was diagnosed when I was 25 years old.

Was waren Ihre ersten Symptome?:

When I was a baby, my neck muscles were too weak and I had difficulty holding my head up.  I was delayed and didn’t start to walk until I was 4year old.  I stopped walking at the age of 14.

Haben Sie andere Familienmitglieder, die LGMD haben?

NO , I’m the only person in my family who has this disease.

Was sind für Sie die größten Herausforderungen im Leben mit LGMD?: For me the greatest challenge is that I cannot do some things such as walking, running. stand without help, get dressed, etc.   I tried to control my activities so that I have enough energy to do the activities that I want to do.

Was ist Ihre größte Errungenschaft?:

One of the biggest achievement in my life is that I have real great parents, friends, and colleagues who encourage me to live a fairly optimistic life and let me forget about my disability.

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

I have become more insensitive to pain and I’m not fearful of any challenges

Was möchten Sie der Welt über LGMD mitteilen?:

I want the world to know that people with LGMD may need more help to live independently – such as a personal care attendant,  improved access to adaptive and assistive equipment as well as medicines.  A cure and treatment is needed to treat all the LGMD patients.

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

I think if I were cure tomorrow, I would run and do everything I never could do!

 

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