LGMD "Spotlight Röportajı"

NAME: Mackenzie   YAŞ: 22 yrs. old

Ülke: ABD

LGMD Alt Tip: Unknown

KAÇ YAŞINDA TEŞHIS KONULDU?

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

İLK BELIRTILERINIZ NEYDI?

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.

LGMD HASTASI OLAN BAŞKA AILE ÜYELERINIZ VAR MI?

No, I am the only one.

LGMD İLE YAŞARKEN KARŞILAŞTIĞINIZ EN BÜYÜK ZORLUKLARIN NELER OLDUĞUNU DÜŞÜNÜYORSUNUZ:

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.

EN BÜYÜK BAŞARINIZ NEDIR:

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

LGMD BUGÜN OLDUĞUNUZ KIŞI OLMANIZDA SIZI NASIL ETKILEDI?

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.

DÜNYANIN LGMD HAKKINDA NE BİLMESİNİ İSTİYORSUNUZ?

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.

LGMD HASTALIĞINIZ YARIN "TEDAVİ" EDİLEBİLECEK OLSA, YAPMAK İSTEYECEĞİNİZ İLK ŞEY NE OLURDU?

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

Daha fazla "LGMD Spotlight Röportajı" okumak veya gelecek bir röportajda yer almak için gönüllü olmak için lütfen web sitemizi ziyaret edin: https://www.lgmd-info.org/spotlight-interviews