Educating, Empowering  and Enabling People with GNE Myopathy 

GNE Myopathy is a rare genetic disorder that causes progressive weakening of the muscles, starting with lower and upper limbs. Symptoms appear in adulthood, generally by the age of 20-30 years. The exact symptoms and nature of disease progression vary a lot between individuals. In general, early symptoms include foot drop, and difficulty in walking and climbing stairs, although in some patients the weakness in upper limbs may appear first.

Gradually there is difficulty in standing up from squatting position, and weakness of hand and shoulder muscles. Eventually most skeletal muscles of the body get affected, although function of heart and lungs is not adversely impacted in most patients. It is said that within 20 years of initial symptoms most patients are wheel chair-bound; however, there are large individual variations.