03/01/2015:

NAME: Julianna AGE: 24LGMD2B - Julianna
COUNTRY: United States
LGMD Sub-Type: LGMD2B

AT WHAT AGE WERE YOU DIAGNOSED:
I started having symptoms at the age of 16 but was not diagnosed until I was about 22 years old.

WHAT WERE YOUR FIRST SYMPTOMS:
My first symptom was tight tendons. My doctor sent me to physical therapy but that did not help much. After that, we found it might be best to have my Achilles tendons lengthened. I had surgery and was in a cast for two months on each leg, one at a time. While recovering and beginning in physical therapy again, my physical therapist noticed that I was not gaining any of my strength back. He sent me to a neurologist for further testing.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: no

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD:
I find that the greatest challenge in living with LGMD is that people have a hard time understanding it. It is not easy to describe LGMD to someone. Many people think that I am exaggerating or even lying about having this disease. I am still mobile therefore they do not think I have any challenges. I wish people would be more open to learning about these diseases and understanding how difficult it is.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:
My greatest accomplishment was graduating from college. I was juggling school work with medical testing’s that I was having done. It was difficult to keep up with at times but I managed to pull through and become involved in school organizations. I joined Gamma Sigma Sigma( a service sorority) and I was events council chair of the United Students Government. I had the opportunity to plan events such as a prestigious speaker and a concert. Limb Girdle did not stop me from going after what I truly wanted. Walking across that stage with that diploma in hand was a feeling that I will never forget.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:
LGMD has taught me to be more understanding of others and their stories. Everyone has a story we do not know. It has also taught me a lot about myself. I have learned what I can accomplish despite minor setbacks. A sense of humor is definitely a must in getting through the hard times. I have learned to be patient and accept the fact that everyone needs a helping hand!

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:
I want people to know that just because you cannot see it, doesn’t mean it is not there! Try to be patient and understanding of people who explain this disease to you. It is just as hard for us to explain as it is for you to understand.

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:
The first thing I would want to do is travel without all the difficulties involved. I would want to go to the beach and swim without needing help. It would be nice to be able to go where I want without having to plan every little detail ahead of time; just not worry and have a good time!

Julianna
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