A little known disability
Muscular dystrophy is a largely unknown disability that needs clinical intervention at an early stage.
While travelling in rural Bangalore, I remember meeting a bright little 12-year-old lad. His mother told me that he was the topper in his class but had to abandon school in the 5th standard. He was too weak to walk to school and back as he had a rather rare disability called muscular dystrophy and the poor mother, who was a daily wage earner, could not spare the time to carry him to school every day.
Muscular Dystrophy (MD) is a largely unknown disability. We do not have exact figures for India but extrapolated data shows that we may have about 1,957 cases in the country and for all its rarity MD is still a disability we should know about.
MD is a hereditary genetic disorder that gradually weakens the muscles of the body. It is caused by the genetic mutation of the X chromosome that leads to an insufficient production of dystrophin, a protein needed to build and maintain healthy muscles. More common in males than females, two thirds of the MD cases inherited the mutation from their mother, while the other one third resulted from a new mutation in the gene.
Once MD sets in, a person will experience progressive muscular wasting, poor balance, frequent falls, calf pain, will walk with a waddling gait, have limited range of movement, experience muscle contractures, difficulty in breathing, curvature of the spine etc. Since MD is a multi system disorder it also affects other parts of the body like the heart, gastrointestinal and nervous systems, endocrine glands, skin, eyes and other organs.
MD can set in at varying times in a person’s life, for some it will begin to manifest itself in infancy, for others in childhood and for still others, symptoms may not appear until their teens or adulthood.
A diagnosis of MD would require a blood test to ascertain the level of creatine kinase in the blood, a genetic test and a muscle biopsy besides others. The prognosis for people with MD varies according to the type and progression of the disability. Some cases may be mild and progress very slowly over a normal lifespan, while for others it may cause severe muscle weakness and functional disability. Some children with MD die in infancy while others live into adulthood with only moderate disability. The muscles affected vary, but can be around the pelvis, shoulder, face or elsewhere.
Since MD has no cure, doctors and physiotherapist will first work to improve muscle and joint function and to slow down muscle deterioration. This will be done through daily physiotherapy. Since MD is degenerative, the person will have to move on to using assistive devices like a wheelchair and other specialised care.
Only few are aware
Because of the low incidence of MD, few people are aware of this disability, which makes many unable to accurately identify early symptoms and begin immediate intervention. This can be detrimental, shortening the life span of the person. While the government invests crores in creating awareness about all types of disabilities, MD must also find a place in these awareness campaigns.
Rehabilitations in the form of constant physiotherapy and assistive devices like a wheelchair is a must for people with MD, besides of course specialised care as the disability progresses. It is a long pending demand of disability rights groups that staff in village level primary health centres be equipped to provide at least basic physiotherapy as private services are available only in urban areas and that too at a considerable cost.
The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 is due to come up for amendment. The seven disabilities currently listed must be expanded to include disabilities like MD. The Sarva Shiksha Abhayan (SSA) which talks about 100 per cent enrollment and “home based education” must have a constructive plan for children with MD as they should not be left out of the educational system.
(The writer is a member of DisAbilityFirst, an advocacy group working on issues of disability.)
The above article was published in the Bangalore edition of Deccan Herald on 25th June 2008 and is available at the following link http://www.deccanherald.com/Content/Jun252008/editpage2008062475140.asp