Intervista con i riflettori della LGMD

Nome:  Dan  Età:  40 Yrs. Old  

Paese: Stati Uniti

Sottotipo LGMD: LGMD2i

A che età è stata fatta la diagnosi:

Mi è stata diagnosticata all'età di 30 anni.

Quali sono stati i primi sintomi:

My first symptom was leg weakness.  I remember stepping over a roll of carpet and falling down because my leg gave out. I walked with an unusual gait. And, I was not able to do one sit up without grabbing my legs to pull myself up.

Avete altri familiari affetti da LGMD:

No, sono l'unica in famiglia con la LGMD.

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la LGMD?:

Definitely, stairs are my greatest challenge right now.  In fact, any step with a riser higher than 3″ is either extremely difficult or a no go. At first, I would compensate for my leg weakness by using my arms on the railing to get up a set of stairs, but in the last few years, my arm strength has been compromised.

Qual è il suo più grande risultato:

I have many small triumphs that I have accomplished. One being able to walk across the Brooklyn Bridge in NYC. My biggest accomplishment though would be accepting and embracing my condition (LGMD), by doing so I have opened up so many more doors and possibilities in my life. I have learned that my condition doesn’t define who I am as a person.

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

LGMD has taught me many things in my life, the biggest one though, would be patience. I have always been a patient person, but I have learned that things don’t happen to me on my timetable, they happen to me when I am ready for them.

Cosa volete che il mondo sappia della LGMD?:

1. That Limb Girdle Muscular Dystrophy is not a clothing garment.
2. That LGMD is simply a test, we are all going through some sort of test in life, mine is LGMD. It’s a matter of “choice” in how I’m going to react and what I’m going to do about it. I’ve got no right to do any less than anybody else. Yes, I have Limb Girdle Muscular Dystrophy, but it will never have me.

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

I would go for a run!

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