12/10/2015

NOME:  Michal   ETÀ: 35 yrs. old

PAESE: Poland

Sottotipo LGMD: Unknown

 

A che età è stata fatta la diagnosi:

I was diagnosed when I was 25 years old.

Quali sono stati i primi sintomi:

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.

Avete altri familiari affetti da LGMD:

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

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la 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.

Qual è il suo più grande risultato:

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.

In che modo la LGMD l'ha influenzata nel diventare la persona che è oggi:

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

Cosa volete che il mondo sappia della LGMD?:

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.

Se la vostra LGMD potesse essere "curata" domani, quale sarebbe la prima cosa che vorreste fare?:

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

 

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