NAME: Ramesh AGE: 28 yrs. old
LGMD Sub-Type: LGMD2B / Dysferlinopathy
AT WHAT AGE WERE YOU DIAGNOSED:
I started having symptoms at the age of 19 but was not diagnosed until I was about 22 years old.
WHAT WERE YOUR FIRST SYMPTOMS:
My first symptom was, when I was going to office suddenly I fell down. I consulted my doctor, he suggested physical therapy but that did not help much. After that, we found it might be best to consult the doctor in Bangalore (India). I had muscle & nerve biopsy and was in a cast for two months on each leg, one at a time. She 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. In addition to the condition, I find the lack of accessibility and social attitudes toward disabled people as very limiting. I wish people would be more open to learning about these diseases and understanding how get rid of this disease.
WHAT IS YOUR GREATEST ACCOMPLISHMENT:
My greatest accomplishment is, managing to work and keep working in my own way.
HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:
I’ve learned to appreciate people helping me, to have patience, to keep being hopeful and avoid feeling depressed, to be thankful for everything, to understand people who aren’t in the same situation as me and who are in a difficult situation, to value what I have and to be a saver, to give more love to my family each day as if it were the last.. 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:
Even most medical professionals are unaware of this condition they have to aware of this and teach the patients how to be safe and challenging towards life.
IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:
First of all I would like to congratulate each and every doctor who helped me, in person. The main thing is, I would like to open one blog about this disease and I will guide and support the patients how to overcome through the disease. I know how I am suffering with this disease. I will not give a chance to others suffer again.