LGMD "Entrevista en primer plano"

Nombre:  Karen  Edad: 54 Yrs. old

País: EE.UU.

Subtipo LGMD:  LGMD 2I

 

¿A qué edad le diagnosticaron la enfermedad?

Me lo diagnosticaron a los 33 años.

¿Cuáles fueron sus primeros SÍNTOMAS?

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.

¿Tiene otros familiares con LGMD?

No, soy el único familiar diagnosticado de LGMD.

¿Cuáles crees que son los mayores retos de vivir con 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.

¿Cuál es su mayor logro?:

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.

¿Qué quiere que el mundo sepa sobre la 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.

Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:

If I was cured tomorrow, I would Rollerblade!

 

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