LGMD "INTERVISTA SPOTLIGHT"

Nome:  Andrea  Età: 24 yrs. old

Paese: Stati Uniti

Sottotipo LGMD:  LGMD2A – a form of Calpainopathy

A che età è stata fatta la diagnosi:

I was diagnosed at the age of 11.

Quali sono stati i primi sintomi:

At age 8, I could not stand with my heels on the ground and began toe walking shortly thereafter. Weakness in my shoulders and hips followed.

Avete altri familiari affetti da LGMD:

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

Quali sono, secondo lei, le maggiori sfide nel vivere con la LGMD:

Not being able to use Uber!

The progressive nature of the disease is challenging. I’ve had to adjust to the loss of certain abilities over time, and it’s difficult knowing that these losses will continue. For example, I could walk as a child, I used a Segway to get around during my teenage years, and now I use a wheelchair. For me, the most difficult adjustments have been no longer being able to visit friends’ homes because they nearly always have steps, and no longer being able to play musical instruments I once enjoyed.

Qual è il suo più grande risultato:

I feel fortunate that I found an area of study in college that I am passionate about and can pursue with LGMD. I’m proud of myself for moving to a new state for graduate school in biostatistics and living independently. But of course several people have helped me along the way (love you mom and dad :).

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

Sometimes life gives you challenges that you can’t change, but the process of dealing with those challenges can often be very rewarding. Living with LGMD has made me a stronger person in many ways despite physical weakness. It has also taught me the value of vulnerability and embracing sadness to fully experience joy. Actually maybe the movie “Inside Out” taught me that…

Cosa volete che il mondo sappia della LGMD?:

Everyone should watch Stella Young’s TED Talk titled “I am not your inspiration, thank you very much.” She shares a great message about the exploitation of persons with disabilities. I believe that the vast majority of us on this earth are doing the best we can despite the various traumas we’ve endured. For those of us with physical disabilities, that trauma is just a little more obvious to the naked eye.

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

This question is the most difficult for me. I’ve never really been jealous of people running, hiking, or going to the gym. I’d probably just go to school but use the stairs instead of the elevator. But that’s a boring answer. Maybe I’d be more dramatic; I could sell my wheelchair and use the money to take my family to Europe. Being able to use the restroom on an airplane could be exciting. But I’d miss the special treatment that comes with using a wheelchair. Being different has its perks.

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