Problem & Analysis
The problems surrounding Muscular Dystrophy are complex and multifold. mdfindia with its organizational experience as augmented by the individual experience of its trustees—all of whom are parents of MD children, perceives the problem, its cause and effect as follows:
- Lack of Care, Support & Protection services: Some major manifestations of the lack of institutional care, support and protection services are; the untimely death advanced by 6-10 years in MD patients as compared to those in the developed countries, very poor quality of life of the these children, and the subsequent mental agony, depression, and hopelessness of the parents/family, and above all the social exclusion or marginalization within the community of PWDs The ignorance of the federal as well as the state governments on the issue and the lack of proper recognition and classification of the disease could be considered as potential causes of this problem. Such ignorance of the state alone results in very poor quality of services; just inhuman treatment at the government hospitals which are meant for the poor. This demoralizes the poor into giving up on their wards. Only in some cases, they manage to go to private hospitals but can not continue the treatment as they are charged exorbitantly.
It is obvious that families with a child showing symptoms of MD has to run pillar to post and exhaust their energy, resources and morale even before the child is actually diagnosed for MD. Invariably, almost all those families come across the term, ‘Muscular Dystrophy’ for the first time in their lives. Often the diagnosis is accompanied with announcements such as; “I’m sorry, no one can help your child”, “It’s MD; incurable; don’t bring the child once again to hospital”, “Don’t waste your money by visiting hospitals one after another’,” Hereafter your child is not for you” make the families feel desperate and jinxed. Hospitals which have a compulsion to show results and thereby make money do not prefer to engage MD children since the prospect of both is dismal; they simply deny them entry. These are the conditions that force the parents to experiment with the alternative medicines, which again make tall claims about their efficacy that is unproven. They not only exploit the scarce resources of the family but also stake the health of the child. The child starts a life of anxiety, fear and pain that results in their untimely death besides throwing their family to emotional and financial ruin.
If the care, support & protection services are unjustifiably bad from the diagnosis to the stage the patient gets seriously ill, the conditions at their terminal stage, usually during 13-16, are unacceptably worse. Deprived, if not denied, of due terminal care at hospitals, the families undergo a real tough time even as members of a civilized society. One can see how they wish their children were either unborn or dead without delay! Don’t these children deserve to die with dignity?
- Not a sign of Prevention: Poor access to timely and quality information contributes to the absence of preventive mechanism / practices within hospitals and families as well. Even the district levels Government Hospitals (GH) with heavy budgetary allocations from their respective states do not have facilities for preventive tests, and therefore, they are not bothered about prevention either. It is painful to note that even the specialist neurologists who offer MD diagnostic services such as the Gene test, Muscle biopsy & EMG and charge the clients heavily for the same do not care to counsel parents about the offspring potential of the disease. It is common in India that the families having their first child diagnosed of MD tend to go in for the next child with the hope of begetting a healthy child; hence we find 2-3 MD children under the same roof. Even the families with a history of MD are ignorant of the offspring risks and fail to take preventive steps i.e. pre-natal diagnosis and/or molecular tests, and thus progressively contribute to the number of MD children/PWDs.
- Voices unheard: The scattered and feeble voices of the tiny groups of parents goonly unheard in the absence of a data base; be it of the state or NGOs/Medical institutions. For various reasons including lack of perspective, even the existing groups satisfy themselves with seasonal/annual/ one-time activities which are mostly charity in nature. As such there has been no collective approach and organized effort that is essential to make the governments listen. Even such routines as helping an MD child get its National PWDs ID card’, ensuring routine medical check-up at the Government hospital, getting admission as in-patient at the time of illness, are far beyond the reach of the existing groups. Such ‘powerlessness’ further marginalizes not only the MD children and their families but also the NGOs who can fight to make the governments take cognizance of the issue.
- Risk of growing unfit when a cure becomes available: Should all the above problems remain unaddressed at the earliest, thousands of the MD children in this large country may just be unfit even to avail themselves of the curative measures that might be available for them in future. Though MD remains incurable till date, researchers are hopeful of finding a cure in a few years. The awaited cure might be in phased processes if not in a simple & one-stop. Given that, it is imperative to effectively slow down the deterioration process on the MD children in order to keep them fit to access the cure in reach.
Addressing these problems in a comprehensive manner, of course with varying priorities and time lines, is the need of the hour; failing of which might not only generate the degenerative disease called, ‘Muscular Dystrophy’ but also significantly contribute to multiply the population of PWDs in this country.