Intervista a riflettori accesi sulla LGMD

Nome:  Karen  Età: 54 Yrs. old

Paese: STATI UNITI D'AMERICA

Sottotipo LGMD:  LGMD 2I

 

A che età è stata fatta la diagnosi?

Mi è stata diagnosticata all'età di 33 anni.

Quali sono stati i primi SINTOMI?

My first symptom was an overall weakness compared to other kids in gym class in grade school.  High School gym class was even worse.  I experienced tight hamstring and calf muscles.  My calves were large. Next was the noticeable change in my gait.

Ha altri familiari affetti da LGMD?

No, I am the only family member diagnosed with LGMD.

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

The greatest challenges of living with LGMD are completing daily personal and household tasks, managing activity and rest, being prepared to access public spaces, and planning for future needs.

Qual è il suo più grande risultato:

With the love and support of my family and friends, I embrace and experience life in spite of ever changing limitations and obstacles.  That is my greatest accomplishment.

How has LGMD influenced you into becoming the person you are TODAY?

Living with LGMD has formed me into an accepting, determined, resourceful, humble, and grateful person. I learned to accept my diagnosis and realize that, as it progresses, it provides me with the opportunity to grow as a person.

Cosa volete che il mondo sappia della LGMD??

LGMD is a progressive disease.  It affects every thought that goes into every motion of every day.  Continued research and development for a cure, treatment, and assistive devices are essential.

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

If I was cured tomorrow, I would Rollerblade!

 

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