07/29/2015:

NOME: Patricia  ETÀ:  26 yrs old

PAESE: Stati Uniti

Sottotipo LGMD: LGMD2A / Calpainopatia

 

A CHE ETÀ È STATA FATTA LA DIAGNOSI:

I was diagnosed with MD when I was 12 years old.

QUALI SONO STATI I PRIMI SINTOMI:

First symptoms were toe walking, arms not going straight, limping gait, and not gaining weight.

HA ALTRI FAMILIARI AFFETTI DA LGMD:

No one in my family has Muscular Dystrophy or LGMD.

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

The greatest challenge is not being able to do certain things such as Walking, Running, Getting out of bed on my own, Bathing on my own, Cooking dinner, Playing with my nephew on the floor. Everything I do is a challenge.

QUAL È IL SUO PIÙ GRANDE RISULTATO:

Greatest accomplishment would be getting married to a wonderful man and hopefully soon starting a family, also when I got my power chair and was able to cook dinner for the first time in 2 years, and being able to go outside with my husband.

IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE È OGGI:

It has made me realize that even though I am limited on things I can do, with the right tools I can still do some of those things just in a different way.

COSA VOLETE CHE IL MONDO SAPPIA DELLA LGMD?:

Educate yourself on LGMD and some of the struggles people go through. Don’t judge someone on how they look. Every form of MD has a different look but that doesn’t make the person. their personality makes the person. If you see someone struggling whether in a wheelchair or walking offer to help, I know for me when someone asks if they can help me I am very grateful for it.

SE LA VOSTRA LGM POTESSE ESSERE "CURATA" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE?:

I would run as fast as I can down the road and around the block, I would jump up and down and maybe even do flips. I dream of the day I can do this.