Intervista a riflettori accesi sulla LGMD

NAME: Mackenzie   ETÀ: 22 yrs. old

Paese: USA

LGMD Sottotipo: Unknown

A CHE ETÀ LE È STATA DIAGNOSTICATA:

I was just diagnosed last year at the age of 21.

QUALI SONO STATI I PRIMI SINTOMI:

My first symptoms included my feet and legs aching, sliding my feet when walking, fatigue and having a hard time lifting objects that should be easy to lift for a person of my age/height.

HA ALTRI FAMILIARI AFFETTI DA LGMD:

No, I am the only one.

QUALI SONO, SECONDO LEI, LE MAGGIORI SFIDE NEL VIVERE CON LA LGMD:

The simplest things can make my body ache (cleaning, trying on clothes, shopping, etc). Constant fatigue is always a struggle. I’m learning to prioritize my daily activities and accept that I can’t always do what I want to do.

QUAL È IL SUO PIÙ GRANDE RISULTATO:

I am finishing college to be an elementary/special education teacher.

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

My diagnosis has been less than a year ago, but I have noticed that reaching my goals are more important to me. I also got engaged this year, and I am so happy that we were together before the diagnosis and he still asked me to marry him! I still have goals.

COSA VUOLE CHE IL MONDO SAPPIA DELLA LGMD:

I want the world to know that we are not lazy. We wish we could be more active. Every day we think about what we want to do but don’t have the energy or pain tolerance to do. I want the world to know that we are people with hopes and dreams, just like them.

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

If LGMD was cured tomorrow, I would want to live without pain and have the energy a 22-year-old should have!

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