LGMD "Wywiad w centrum uwagi"

Nazwa:  Anne   Wiek:  56 yrs. old  

Kraj: Stany Zjednoczone

Podtyp LGMD:  LGMD2A – also known as Calpainopathy

W jakim wieku zostałeś zdiagnozowany?:

For having Muscular Dystrophy, I was diagnosed around 4 years of age. The specific 2A diagnosis didn’t happen until a DNA test at the age of 46.

Jakie były pierwsze objawy?:

My first symptom was that I walked on my toes and a “gut” feeling that my mom got that things just weren’t right.

Czy masz innych członków rodziny cierpiących na LGMD?

No, I am the only person in my family.

Co uważasz za największe wyzwanie w życiu z LGMD?:

I find it challenging to stay a part of society. Not being able to get into other people’s houses, jump in the car and go or easily fly to other places makes me feel left out. As I struggle to get dressed and then hear about all the wonderful things that my friends and family do, it is discouraging. I want to be included in people’s lives and not just be always just watching from the sidelines.

Jakie jest twoje największe osiągnięcie?:

I feel proud of the fact that I graduated from college and had a successful career. Navigating the corporate world and competing for new positions was difficult, but I was able to do it! Although I am no longer able to work, knowing that I was able to succeed while my body deteriorated makes me feel good.

Jak LGMD wpłynęło na to, że stałeś się osobą, którą jesteś dzisiaj:

I think that having LGMD has taught me to prioritize. Not just tasks, but for the quality of life things. I have limited energy and have learned to spend it on things that make sense for the big picture. Dirty dishes in the sink are not as important as spending time with my husband or a friend.

I also believe that having my own struggles has helped me to be more compassionate to others who are struggling.

Co chciałbyś, aby świat dowiedział się o LGMD?:

I would like them to know how debilitating it is and that it is something that can be cured!  With contributions toward research, others can help us to cure this disease.

Gdyby jutro można było "wyleczyć" chorobę LGMD, co byłoby pierwszą rzeczą, którą chciałbyś zrobić?:

I would RUN to my husband and give him a huge hug!

 

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