Kargil is situated at the very north of India in the (LOC) line of control with Pakistan. It is only 204km from Srinagar but takes about 8 hours to reach by road, which are open to all traffic from mid May to mid November. The views are breath-takingly beautiful except for the long journey and the interminable wait behind long army convoys.
Kargil town is small and its businesses mainly cater for local needs as well as the government and army presence. There are some 140, 000 people in and around Kargil. They inhabit mostly in the small villages spread far and wide in valleys wherever they can survive, in-between nothing but uninhabitable desert like areas. The villages are surrounded by green fields of rice and apricot trees in summer but winters are long, cold and snow bound, allowing very little in term of outdoor activities. They are very poor but proud and fiercely religious people.
From Kargil, we made a 3 hour journey to a village called Sankoo and later Namsoora. The very hard working and selfless local volunteers (2 teachers and an aalim) had arranged for us to meet with mostly children with disabilities. Their ages ranged from 5-34.
Their disabilities were heart wrenching. Child after child was shown to us who was unable to walk or sit, unable to feed themselves or to communicate and incontinent of urine and stool. Nearly all of them have had it since birth or very soon after. All births take place in homes where women are reluctant to go for medical help which is far and patchy and does not give confidence. Almost 60% of the disabled fell in this category.
Your heart goes out to the guardians who have been able to look after them so well. None smelt foul and although some of the children looked like they were one or two years old when they were five to ten years, it is probably from their inability to develop and take only liquid or semi liquid, rather than from lack of being looked after. For these group of people very little can be done medically except to deal with their day to day problems as they arise. Long-term prevention is what will drastically reduce their numbers. We need to help the community to think up and implement strategies which will not allow their brains from being damaged during birth and soon after. The guardians also need a lot of help in terms of material and moral support. The head man of Namsoora village repeatedly said he needs a “hospital” in his village.
There were two young ones who had epilepsy which was not treated from lack of resources. Both had decreased mental capacity from repeated uncontrolled fits. Both could easily be helped at least from further deterioration in their mental capacity and from accidents during fits by regular anti-epilepsy treatment which probably would be life long. We need some kind soul to adopt them.
There was a boy who had got burnt during a childhood accident and has lost his right hand. A grotesque stump remains. He could definitely be helped with rehabilitation and possibly an artificial limb.
Another bright young boy had weakness in his legs possibly from childhood polio he walks on the back of his bent left foot rather than his sole and could be helped with rehabilitation and possibly corrective surgery so that he could walk as normally as possible and lead as normal a life as possible. Any help we could give him and the boy without a hand would add immeasurably to their quality of life and future prospects.
One teenage girl has a birth defect which includes a disfiguring crimson/purplish birthmark on her left side of the abdomen right down to the thigh and increased blood vessels in the groin area with enlarged left foot and very large disfigured large foot toes but only partially so on the right foot. She probably has a malformation of the circulation of her lower limbs and potentially capable of help if she gets Vascular Specialist help.
One of the most distressing sight was a family of three (a sister and her two brothers) ranging from mid twenties to mid thirties who have a genetic disorder which manifests itself at a age of around 10 years when they start getting problems with their joints and progressively get knobbed hand joints, knees, becoming bent in the spine and eventually their muscles become small, stiff and inflexible so that they have bent knees and need to be carried from place to place. Even a little effort is very strenuous and they also have mental deficiency. I’m going to show their images to my colleagues to get an approximate diagnosis to see if any help can be extended to stop the progress of the disease. However this family needs a lot of help simply to survive as there is only a younger sister who is there to help them all and her prospects of marriage are dim simply because she may not be able to leave them on their own.
In these areas although schools and smartly dressed school children were visible, health facilities were hardly seen except in large towns like kargil, etc. 80% of the disabilities seen were due to lack of basic health facilities especially during birth and soon after. My guess is there is a very high infant mortality. There is a strong link between female education and child survival and that should be our long term plan. However we cannot wait ten to fifteen years for this to happen and so we should try and help our people with basic health care. An excellent thought from discussion during this trip could be empowering local girls who have had basic schooling and helping them with a training certification and probably a driving license for a motorcycle very similar to the Chinese barefoot doctors. This could provide health education and basic health care but mainly connecting the villages to the health facilities.
I have confined my comments to the disabled, but during my trip I saw the tangible results of the help given to build schools, mosques, orphanages and help to the sick and needy. I feel that Comfort Aid International and Al-Imaan Foundation are doing an excellent job and deserve our full support. This support should be moral and monetary but more important it could be from contribution to the cause with our time and expertise. May Allah give us that strength and give them Jaza-e-kheir.
Dr. Afzal Yusufali
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