LGMD "INTERVISTA SPOTLIGHT"

Nome:  Scott  Età: 48 yrs. old

Paese: Stati Uniti

Sottotipo LGMD:  LGMD 2L – also known as Anoctaminopathy

 

A che età è stata fatta la diagnosi:

Although my MD began about 15 years ago, I was finally diagnosed recently with limb-girdle MD Type 2L. Until now, I was only informed by doctors that it was LGMD.

Quali sono stati i primi sintomi:

I began having difficulty climbing stairs and running.

Avete altri familiari affetti da LGMD:

No

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

I have always been an independent person.  Since I am an only child, I always did things on my own. Lately, I have had to rely more and more on family and friends.  Also, it drives me nuts as to how long it takes me to do things now.

Qual è il suo più grande risultato:

I am proud to have completed college and earned my degree.

Also, I am happy to have worked 30 years for the same company before having to resign due my struggling with MD.

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

I am still trying to develop patience. I take pride in accomplishing tasks that once I took for granted.

Cosa volete che il mondo sappia della LGMD?:

Please continue to support local and national MD charities whether it be financially or volunteering time to those in need. It is greatly appreciated.

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

Walk unassisted down by the ocean at one of my local beaches.

 

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