Homeless, huddled under a roof

The unfortunate victims of Leprosy, a curable disease still considered as a social stigma, have found a place which they consider their home. A community of the abandoned, getting together
Homeless, huddled under a roof
The team of Gauri Kaul Foundation organized a day long camp in the Lepor Colony on 2nd of July as part of the Gauri Old Age Mission (GOAM).
Special arrangement

Leprosy has affected humanity for thousands of years. The word "leprosy" comes from the Greek word "λέπος (lépos) – skin" and "λεπερός (leperós) – scaly man. It is also called Hansen’s disease after the scientist who discovered the causative organism, a bacterium which is very slow to grow and spread. It leads to damage of the nerves, lungs, skin and eyes. This nerve damage results in a lack of ability to feel pain, leading to repeated injuries or infection due to unnoticed wounds. They can also experience muscle weakness and poor eyesight. Leprosy has affected humanity for thousands of years. The disease has been a stigma traditionally in spite of it being curable by antibiotics since 1945. Lepers have been treated as outcasts by the community since days immemorial. According to WHO, new cases in India during 2019 diminished to 114,451 patients (57% of the world's total new cases). Until 2019, one could justify a petition for divorce with the spouse's diagnosis of leprosy.

British India enacted the Leprosy Act of 1898 which institutionalized those affected and segregated them by sex to prevent reproduction. The act was difficult to enforce but was repealed in 1983 only after multidrug therapy had become widely available. In the 1890s, when leprosy had our region in its grip, there was only a ward in Mission hospital, Anantnag, to treat the infected. On his visit, Lord Roberts, the then commander-in-chief of India designated a big building to isolate those infected by the disease. It accommodated 30 patients. They required constant monitoring and care, and the place became their home. This hospital was previously a structure made out of mud, but as the number of patients steadily increased, new concrete wards have been made for them

While interacting with the inmates of Leper Hospital Srinagar, it was observed that the department of Health Services Kashmir through the Chief Medical Officer, District Srinagar is providing basic dietary and other essential commodities besides free medication from the health department. The services includes a free ambulance for sending the needy patients to the nearby Health facilities for necessary investigations at no cost to them. Multidrug Therapy (MDT) has been started during the year 1994. All the leper inmates are infection free.

The colony is located in Bahrar, a place on the outskirts of the old city of Srinagar, in a very large and scenic area, with Nageen lake on one side and a view of Hari Parbat on the other. The team of Gauri Kaul foundation organized a day long camp in the Leprosy colony on 2nd of July as a part of the Gauri Old Age Mission (GOAM). Prior permission to do this charitable activity was taken and active support was given by the CMO Dr Jameel Mir and his team especially Mr Saleem.

Leprosy has a standard curable treatment with antibiotics. The colony has separate mud huts away from the hospital allotted to the patients who have been sent from various parts of Jammu and Kashmir including very remote areas, lately because of increased occupancy and wear and tear, concrete residential quarters have supplemented these huts. We met several inmates from Kargil, Gool Gulab Garh area of district Ramban, and various other parts of the valley including Kupwara, Kulgam and Anantnag, making them a mixed community. The inmates had been abandoned by their blood relations but they found love, care and acceptance away from their natural families, and decided to never leave the place. The place has become their home. The numbers of inmates gradually increased, to 72 (48 females). In addition, there are 11 registered healthy contacts. We thus saw three generation of people which includes children and grandchildren during our one-day visit. They get their ration, cooking oil, vegetables, mutton, clothes to wear and tapestry for homes and a monetary allowance of Rs 1000 per month. From time to time, they also get some help from various philanthropic societies.

In addition, many of them who are in a condition to do some physical work go out of the colony to the neighbouring areas and work as unskilled labour and make some more money. The older members of the colony are thus a contented lot. While talking to them they were talking more about their reminisces and companionship than the unfortunate fate which brought them here. They hold their newly found relationships as a very positive feeling.

The children born there however have several issues, some of them go to schools outside the colony and do not like to disclose the name of the place from where they come from. Very few have had full schooling. Most have learnt some vocational activities, like tailoring, carpentering and masonry etc. Those who did better have left the colony and have their living places away and do not want to visit the place where they were born.

Our team had taken equipment for measuring their blood pressure, blood sugar and all the routine biochemistry besides point of care bio markers for heart failure and injury to heart (nt Pro BNP, D dimer, and troponins). We had ECG machines and did electrocardiograms for all the inmates. The camp was done in the premises of the hospital which has a medical officer and paramedical staff.

In all 90 inmates we evaluated, 72 were more than 60 years of age (Senior citizens). We found 49 (55%) had high blood pressure and 19 (21%) had diabetes. Both diabetes and high BP was seen in 15 of them (17%). Senior male citizen had high BP and diabetes in larger numbers than their female counterparts. The BP control and sugar was inadequate in more than half of the patients. There was a common complaint that supply of drugs from the health authorities was inadequate and often erratic. We found 3 new inmates with high blood pressure (with levels of more than 200 mms Hg). Likewise, 2 patients with sugar levels as high as 326 and 428 mgs/dl. None of them were aware of their illness although had typical symptoms. There were 4 patients with permanent heart pacemakers implanted in Srinagar govt hospitals.

Two additional patients need pacemaker implantations, one of them is trying to collect finances and the other one was not aware of the need. All of the adult inmates have been vaccinated against COVID 19. Our foundation had taken generic drugs for the treatment of high BP and diabetes and gave the needy patients one month’s supply and have decided to continue providing this help for the long term. GOAM, will adopt the colony for their medical needs including providing them wheel chairs and reconstructive surgeries for their limbs wherever needed.

This mission runs on generous grants and Intas Pharmaceuticals Ltd an Ahmedabad based company was the sponsor for this event.

Lessons Learnt:

The unfortunate victims of Leprosy, a curable disease but still considered as a social stigma, have found a place which they consider their home. They talk about their companionships and love with other inmates of the colony after being deserted.

The administration is looking after their basic needs very well. Majority of them, however, are senior citizens and have medical problems like high BP and diabetes with associated complications. This aspect needs to be realized and appropriate help provided for them. The numbers are not large and manageable.

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