Intervista a riflettori accesi sulla LGMD

Nome:  Keisha  Età: 31 yrs. old

Paese: Stati Uniti

Sottotipo LGMD : Unknown

 

A che età è stata fatta la diagnosi:

I was diagnosed about 5 years ago at the age of 25-26.

Quali sono stati i primi sintomi:

I noticed that I was repeatedly falling and that my leg would give out without any warning.  I also recall that I was unable to raise my right arm unless I had assistance.

Avete altri familiari affetti da LGMD:

So far, no one in my family has muscular dystrophy but I plan to have my parents tested to see if they are carriers.

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

One of the greatest challenges is always having to plan ahead – if going out with friends or family to make sure the place is handicapped accessible.  Every day it also takes me longer to get dressed in the morning.

Qual è il suo più grande risultato:

Coming to the fact that I have LGMD and still trying to figure out which form of LGMD.  And learning to embrace it.

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

I feel LGMD has made me an unique individual helped me to bring awareness of the disease to others that don’t know much about it.  Having LGMD has helped me to become stronger and more independent.  I know that having LGMD is a part of me, I am human and still have my days just like anyone else.  I am a strong and proud woman with LGMD.

Cosa volete che il mondo sappia della LGMD?:

LGMD is something that currently has no cure.  It is something that won’t go away.  Physical therapy and aquatic therapy help manage the disease.  Even with LGMD, we are still strong and can live a normal life just like anyone else.

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

If I could be cured tomorrow, I would want to run a marathon, run up and down the stairs, and take a big vacation somewhere to celebrate!

 

Per leggere altre "interviste LGMD Spotlight" o per proporsi come volontari per una prossima intervista, visitate il nostro sito web: https://www.lgmd-info.org/spotlight-interviews