Worth the Ride --- My Journey with Duchenne Muscular Dystrophy
Duchenne muscular dystrophy (DMD) is an X-linked recessive disorder. It affects more males than females. Usually if a mother is an obligate carrier, there is a 50% possibility for her sons to be affected whereas none of her daughters will be affected though half of them will be carriers. Most of genetic disorders including DMD, if not all, affect more than one organ and system in the human body. MDM patients barely demonstrate symptoms at birth. But they will manifest significant developmental delays in their early life. In another word, they are late to reach developmental milestones such as sitting, crawling, standing or walking. Their calves usually overdevelop, and thighs are wasting compared to normally developed age-matched kids. With the progression of the disease, most of patients will lose the functions of walking and breathing. Their muscles are too weak to move even a mouse. They usually suffer heart diseases and pneumonia. Their life expectancy is usually no more than 30 years. The gene causing the disease was discovered in 1980s. Unfortunately there is no treatment for DMD to date. The autobiography “Worth the ride --- my journey with Duchenne muscular dystrophy” illustrated Josh Winheld’s life as a DMD patient.
Josh was diagnosed DMD at age 4. His life was genetically preprogrammed to be different from others’ and full of hardships. He had experienced many difficulties in his short life which the healthy can hardly imagine. He had to surgically fuse his spinal cord so scoliosis could be avoided. He started to rely on wheelchair and Hoyer lifts before graduating from high school. He had tracheotomy and breathed with the help of a ventilator while pursuing a college degree. When his heart hardly meets the need of his body and could stop at any minute, he had to implant a defibrillator. Josh had always been dreaming of being independent, it was painful for him to ask for help to deal with some simple privacy which is never a problem to healthy people.
Nevertheless, like many patients with DMD or other incurable disorders (I learned from books read a while ago), neither Josh nor his family ever gave up hope of leading a better life as possible as they could. Josh attended regular schools and focused on his study and dreams rather than his disease and weaknesses. With his extraordinary writing skills, he even got a job. As a DMD patient, Josh knew everyday could be his last day. So he studied and worked very hard. He fulfilled as most as he could. Josh was a real fighter and he won.
The book is very inspiring. Through Josh’s lens, I learned a world so different from that of many people I have known. Life in this world is painful, tragic and yet unbelievably productive and respectable. As a disabled, he accomplished more than many normal people. In addition, Josh had wonderful personalities, caring, humorous and uplifting, which was attributed to the way he was raised and his invaluable virtues influenced people around him. By learning the experiences of Josh and his friends Brian and Michael who were brothers with DMD, I am aware of how tough and positive they were, how strong their desires were to lead a normal life of having their own families and kids, how much they hated to be a burden of their family, and how much they dreamed of enjoying life with their friends. I feel so lucky to be healthy and capable of helping others. If a patient suffering incurable disease can do so much, we should do more and better.
