07/06/2015: 

İSİM: Ramesh  YAŞ: 28 yrs. old
ÜLKE: India
LGMD Alt Tipi: LGMD2B / Dysferlinopathy

KAÇ YAŞINDA TEŞHIS KONULDU?:
I started having symptoms at the age of 19 but was not diagnosed until I was about 22 years old.

İLK BELIRTILERINIZ NEYDI?:
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.

LGMD HASTASI OLAN BAŞKA AİLE ÜYELERİNİZ VAR MI?: No

LGMD İLE YAŞARKEN KARŞILAŞTIĞINIZ EN BÜYÜK ZORLUKLARIN NELER OLDUĞUNU DÜŞÜNÜYORSUNUZ?:
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.

EN BÜYÜK BAŞARINIZ NEDIR:
My greatest accomplishment is, managing to work and keep working in my own way.

LGMD BUGÜN OLDUĞUNUZ KİŞİYE DÖNÜŞMENİZDE SİZİ NASIL ETKİLEDİ?:
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!

DÜNYANIN LGMD HAKKINDA NE BİLMESİNİ İSTİYORSUNUZ:
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.

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