“LGMD Spotlight Interview”

Nome:  Tasha                 Età: 27

Paese: United States

Sottotipo LGMD: LGMD2B

A che età è stata fatta la diagnosi:

I was diagnosed at age 12. I was a 6^th grader at that time in elementary school.

Quali sono stati i primi sintomi:

Earliest symptoms were when I was a toddler. As my mom would explain, I would trip on a blade of grass and fall down. We really noticed something wasn’t right when I played softball and couldn’t run right. I would lean my shoulders back, stick my stomach out, and run on my tippy toes. To this I received the nickname “Twinkle toes.” We also noticed that my right arm wouldn’t straighten out all the way at the elbow.

Avete altri familiari affetti da LGMD:

I am the only one that has been diagnosed with LGMD. I’m hoping no one else will have it either.

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

The greatest challenge living with LGMD is mobility. Up until I was age 21, I could run up a flight of stairs without difficulty and even skip a few on the way up. It seemed that once I hit my 20s, my symptoms became visibly worse. I am now 27 and I struggle with uneven surfaces and stairs and frequent falls. If there is not a handrail present on a flight of stairs, I have to crawl up them. If there is any slight incline in a walking surface, I walk straight legged up the incline and a very slow pace. Unfortunately, stairs give me anxiety when in public. I try to avoid stairs at all costs when in public. I bought a house 4 years ago and I specially bought one with stairs in the house. This way I can continue to have stairs in the privacy of my own home and continues to engage in stair walking in my daily life. My biggest challenge with stairs in my home, however, is trying to carrying a laundry basket up the stairs. I have modified the way I do it. I get down on my knees and lift the basket up one step at a time (this seems to work best for me). One thing my husband and I are slightly nervous about is what will happen when we decide to try for children. I know that my symptoms could become worse and that carrying a baby up and down the stairs is not ideal. I also struggle with getting out of low chairs or couches.

Qual è il suo più grande risultato:

My greatest accomplishment was graduating with my Nursing degree. We all know how busy we are as nurses and I am so thankful that I can continue to work as a staff nurse on the floor which keeps me active with LGMD. I have the pleasure of working on a Rehab department where I get to help others with a disability and can relate to them in many ways.

I also would like to mention that I found one heck of a husband named Tony. He strives to help me with diet, exercise, and health tips to keep my weight maintained. He also takes time to research MD and what we can do to slow down the progression. He is always there to give me his hand or help me up the stairs when I need it. He never once complains about having to carry the laundry up the stairs or taking a different route while walking with me. I truly am blessed to have him!

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

LGMD has really shaped me into the person I have become today. I’d like to say that it has made me humbler. I always say that if I were never diagnosed with LGMD, I probably would be some hot shot thinking that she can play any sport, achieve any goal that seems impossible and be a person that is self-centered. Having LGMD I have to be strong every day. This is not only physically, but mentally as well. In a way, it was made me more stubborn because I strive to do things on my own up until I need help from someone else. I feel that being a RN with MD is a great way to show my patients that no matter what life throws at you, it is not the end of the world; modifications just need to be made. I strongly believe that having MD has made me rely on my Heavenly Father more. As I pray that he cures me, I also pray that He uses me in ways to reach others with LGMD. We all know the saying, “We don’t know how strong we are until being strong is our only option.” I can say this is a great way to live each day with LGMD. We must stay strong, even when our muscles fail us.

I also want to thank my family and friends for their patience and love that they give me. Always quick to help and always involving me in all things. One cool thing that we make a joke about me having MD is this saying (especially when I fall or trip). “Oh, my MD is kicking in!”

Cosa volete che il mondo sappia della LGMD?:

I’d like the world to know that we are human just as anyone else. We can do the exact same thing as someone without MD, however, we just have to modify and take our time on it. It’s wishful thinking to hope that no one would look at us and wonder what is wrong, however, it would be nice. I’d like to suggest to those who don’t know much about MD is that you never know what someone is struggling with. Instead of causing more pain and hurt to that individual, be their sunshine on their cloudy day.

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

I always say, the first thing I’m going to do when I get to heaven or LGMD is cured is run as fast as I can. To be able to run just a mile and listen to my music while observing the scenery would be perfect.

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