Duchenne muscular dystrophy, first described by the French neurologist Guillaume Benjamin Amand Duchenne in the 1860s, is a genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy that shows the most rapid disease progression.
DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between the age of 3 and 5. Muscle weakness can begin as early as age 3, first affecting the muscles of the hips, pelvic area, thighs and shoulders, and later the skeletal (voluntary) muscles in the arms, legs and trunk. The calves often are enlarged. By the early teens, the heart and respiratory muscles also are affected.
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because this is an inherited disorder, there is always a risk of a family history of Duchenne muscular dystrophy.
There is no known cure for Duchenne muscular dystrophy. The present treatment options available aims to slow the progression of the disease and improve quality of life.
Abhinav Kumar’s Story
Here is a case study of Mr Abhinav Kumar, 27 year old, who has been living with Duchenne since the past 23 years, but is determined not to let the disease take a toll on him. Abhinav was only a mere 3 ½ years old when during a routine health check up his father mentioned to the doctor his difficulty is getting up when sitting on the floor and his tendency to abruptly fall while running. The doctor suggested a muscle biopsy and the results sent a wave of despair in the heart of his parents when young Abhinav was diagnosed with DMD, the most progressive form of muscular dystrophy. He was immediately put on medications. Parents also tried alternative treatments like homeopathy and ayurvedic medications but not many improvements were seen. The biggest troubles began when at age 14 he had respiratory distress and had to be put on the ventilator.
“My life was on hold, I did not know what to do. Ultimately, I was left with no choice but to accept the situation. Put aside my pain and sorrow and to move ahead to give Abhinav a life he deserves.” says Mr. Kumar, father of Abhinav Kumar.
Abhinav Kumar‘s father first approached NeuroGen Brain and Spine Institute in the year 2012. On examination, it was observed that he had extensive muscle weakness and wasting. He underwent stem cell therapy along with a rehabilitation program under the supervision of the experts in the field. He was given specialized sessions for physiotherapy, occupational therapy and psychological assessments. The aim of the rehabilitation program was to improve his vital capacity. He was given passive exercises, breathing exercises and exercises to improve bilateral and hand functions.
Inspite of still being on the ventilator, Abhinav’s condition has become stable post stem cell therapy. He’s more lively and cheerful and has started operating his computer independently.
“So many changes kept on happening in my son’s life. He stopped walking then he was unable to stand. Hospitalization occurred again and again. Abhinav came home with tracheotomy and ventilator which has not left him till today. However, after stem cell therapy with Dr Alok Sharma at NeuroGen Brain and Spine Institute, he has shown definite improvements. Inspite of all the happenings, he is still cool, calm, charming, and joyful and lives a fulfilled life every moment.” says Mr. Kumar, father of Abhinav Kumar.
Detailed Facts About Improvements After Each Stem Cell Therapy
Improvements seen in Abhinav Kumar post first Stem Cell Therapy
- Abhinav’s tub has been removed after first month post stem cell therapy
- Finger, leg, toes movement are now seen.
- Face looks lively and vital
- He feels confident and mentally settled.
- Could use his finger of right hand for operating computer.
Seeing the improvements in Abhinav, he underwent another session of stem cell therapy along with rehabilitation in September 2013.
Improvements seen in Ankur Kant Post Second Stem Cell Therapy
- His stamina has improved
- Swallowing has improved
- Hand muscle wasting is less than before
- Speech is more louder
- Attempts to speak more
- Feels more confident
What Mr. Kumar, father of Abhinav Kumar have to say
“Abhinav has given me a definite intention to live my life. He is my Guru, I have learned values of life from him, I am the way I am because Ankur was gifted to me By God.” says his father with a look of determination that clearly states that he will not give up whatever be the situation.