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" My experience at Jyothis " Dr.Divya Mithal, Medical Officer
From the time of its inception i.e. September 1999, i am working as a doctor at JCC. It has been 10 years of journey. To put it in one line, i can say that it was a unique learning experience which enhanced my horizons many folds. Not only my HIV infected clients helped me learn about the disease in details, they gave me the opportunity to serve them and deeply sensitizing me about the human sufferings. The complex nature of human thought process making them behave how they behave has been an eye opener. I have found that the problem of stigma and discrimination is not the only problems area. Those who recover might not always be sensitive to other clients who require a helping hand. Also, compared to many other chronic diseases, HIV-AIDS patients get a lot of support, care and free treatment. Many of the infected and affected widows and children get various benefits in the form of nutritional support, educational support, rehabilitation support. But not all make the best of the help offered.
Many still feel that much more help should be given. Many feel that there should be a life long availability of free stay, free food, free medicines. Also, those positive people who get together and form positive peoples' network too have their own politics leaving the help seekers frustrated. Their hierarchy system is worth looking at. The inside stories of each PLHA teaches you something new about the human behavior. It is extremely interesting and unique experience of visualizing the human mind when traumatized due to illness, poverty, stigma and discrimination. Here, we diagnose and treat the PLHAs for the various opportunistic infections( o/is). To start with, we started keeping the in patients for as long as the PLHA wanted. There was not much stress on discharging the clients. Many patients remained hear till they died. For the first 6 years of my work, I had just basic medical knowledge without any training in HIV medicine. HIV infection therefore, threw a large number of challenges from a treating doctor's point of view.
The various opportunistic infections and co- morbid conditions like drug abuse, hepatitis B/C,TB, co infections were difficult situations to face. Also recurrent skin problems were resistantant to treatment. All this changed after me undergoing F.H.M.(fellowship in HIV medicine) from C.M.C., Vellore, Tamilnadu in 2005.Then followed a series of changes in our work. Our center dropped the "terminal" word from it's name and we are called jyothis care centre now. The objective of main streaming the client was thus achieved by sending the client back to the family and the society using family counseling by the trained counselor. The improved self esteem due to positive thinking imbibed by the counselor helps in positive living by the PLHA.
In the past 10 years we had about more than 6000 old and new cases registered at our centre. To benefit maximum number of PLHAs and to sensitize the society, many community awareness programs are held by JCC from time to time. Till now, 10 villages and 6 schools, and various colleges got the benefit of this efforts. Educational tools like games , CDs, materials are used effectively for this purpose.
It is a satisfying work but there is a challenge to run the center only on the NACO fund which is not adequate. ( it is only for 10 beds) if all those getting palliative care here need to get the same care as they have been getting till now, there should be more funds available to the management. It is my prayer to the god almighty to look at all our needy and poor and help us for what we are striving for.
" My sweet memories of Jyothis " Sis. Doris S.D, Chairperson
In the contemporary age, we all are living in an innovative and sophisticated world. All are striving to reach the summit of success in all spheres of life, be it industry, economy, information technology, science or health. No doubt, the human beings have succeeded in their pursuit for success. As humans madly run after their ambitions, one has to realize everything is not under his/ her reach. It is humiliating to discover HIV/AIDS the unscanned virus is an incurable disease and more than 45 million people are the prey of this dreadful epidemic infection. The affected persons are desperate knowing, their days are counted and there is no recovery from it.
It gives me immense joy to share some of my experiences while working with HIV/AIDS patients. I had the rare privilege of being with them for the past three years as a full time social worker cum councilor at Jyothis care centre Kalamboli and Taloja where we accommodate 70 patients. During our outreach program, I had the opportunity to interact with many affected families and was able to discover that they had a mountain of problems with in themselves, their families and neighborhood. Most of these were broken families, and had difficulties to cope with the situation. Some of their children were affected with no faults of their own. These patients and their families were cut off from the society and were left out, causing much pain. My heart went out to them especially to their children. In some cases I was able to mend the broken families and give a ray of hope to the to the affected persones.It was also A satisfying experience to get some of these children to school. Some were very co-operative, took life easier, and were able to go back to work. In certain cases the patients could not forgive their partners and their condition detoriated fast and died in hatred. But, in the long run it was a satisfying experience to see many people were coming out from their gloomy state to a hopeful and better life.
We the congregation of “ The Sisters of the Destitute” are trying our level best to give the Compassionate Love of Christ to these less fortunate friends of ours.
Lately Govt has been providing ART medicines and DOTS for10 in patients and op patients, which have improved their health and live a longer life.
We are really very fortunate to be in this locality, as many of our friends in and around this area and Mumbai have been extremely generous in helping us in our venture to help them. Help is provided in the form of food items, clothes, toilet articles, and money. We are much grateful to all our benefactors and pray that God bless them a hundredfold here and more here after. Every little step is helpful. Every little success boosts the patient’s confidence. We invite many more friends to join us to share your love and generosity with our friends.
It is time for us to wake up and do something concrete and creative to save this people from their unfortunate state of life for a better future. It is said, “Prevention is better than cure.” We have to work hard to prevent from spreading the disease by awareness programs. It is important to have a compassionate attitude towards these less fortunate fellow beings. In the orchestra of life, for some reason or other, they have become the victims of this terminal disease.
" A dream fulfilled " Mother Preethy S.D, From the Provincial corner
‘In our Shining’ and ‘Incredible’ India, AIDS and its opportunistic diseases stalk our cities and villages and the people are struggling to live with far less than their bodies needs. The persistence of hunger, disease natural and other calamities are taking a bad toll on the Indians as a whole.
It is a bolt from the blue to be diagnosed with HIV/AIDS. Very often the disease progresses to a point beyond treatment. At this juncture the patients and the families feel frustrated, angry, depressed and resigned to their problems.
To give solace to these people our sisters started palliative and rehabilitation centers at Kalamboli & Taloja respectively. It has been a rewarding experience for our sisters who have been with them for the past ten years. The physical, moral, and material supports of our well wishers have taken us a long way in fulfilling our dream.It is a great gift and big surprise to know made it possible to have a website of our own, which is beyond our imagination.
Congratulations to all the sisters & staffs for the wonderful set up you have organized at Jyothis care center and for giving hope to the hopeless and building our Nation and bringing them to the main -stream. Gods blessings and my heartfelt wishes, to all those who have been working at Jyothis Care Center you will be able to create a better world and your reward will be great. One need not be great to get started, but one has to get started to be great.
" I have come to give life, life in abundance " John: 10:10
Sr.Elsius.S.D, Ex-Chairperson
It was a golden and memorable opportunity to be in the Jyothis Care centre at Kalamboli in Navi Mumbai for 3 years at the disposal of unfortunate, forsaken, destitute HIV/AIDS patients.
I had a great desire to bring a ray of hope and light of Christ in to them. I could not do much but being with them spending some time with them and at times a smile or a consoling word was very rewarding. The time spent in prayer was very soothing for their body and soul.
Unfortunately the stigma that is often associated with HIV may make more difficult to share their HIV status with family or friends. They often feel fear of rejection, lack of understanding and burdening the family and friends. Usually they feel isolated, sad, depressed, anxious, and also they may have guilt feelings. Prayer therapy, singing practice, playing games and outing has been very helpful in elevating their mood.
It is a great joy to see many poor and destitute affected and infected people come in OPD and deserving ones are admitted, and others are in the follow up programme. The Jyothis family which includes sisters, doctor, counselor, social workers, out reach workers and our friends welcome and treat them with much love and care. It is my great privilege to thank our benefactors and well wishers for the timely generous help and co-operation. As we stand for the less fortunate and the marginalized we rely on local donation and any other possible help that others can offer.
‘Thank you and God Bless you’…
" A glimpse from the past "
Sr.Infanta S.D, Administrator
As we start our journey towards the 21stcenturay, we all are aware of HIV/AIDS, a deadly and dreadful disease which is eating up mankind at a much greater pace than any other disease. The overall effect of infection with HIV is slow damage to bodies’ immune system. AIDS leaves a person terminally ill with a state of no recovery resulting in death.
With alarming rise in the cases of HIV cases of people in Mumbai, the existing services were inadequate. While more services were non-residential, there was a great need for residential care centre, especially during the last stages of illness. In our experience of last 10 years in this field, a large number of people with HIV/AIDS were denied care and ended up in inhuman death due to stigma and discrimination attached to the disease years ago.
We, the Sisters of the Destitute, have the charism to attend to the poor, needy, destitute, the less fortunate and downtrodden. As we found these affected patients to be looked after we started Jyothis Care Centre in 1999 to provide medicine, food, love, care and support. We are able to give comprehensive and holistic health care and support people living with HIV/AIDS. Also we are able to sensitize and create awareness on HIV/AIDS and its prevention among the general population especially high school children, industrial workers, truck drivers and empower women group.
During the beginning stage of our institution patients were very desperate as the family members disowned or isolated them and once they got admitted to the care centre, hardly anybody came to see them. But now, things have changed with the latest treatment. The patients get much better, the relatives
visit them and also take them home. It is really rewarding to see the progress taking place in this field. I hope in the near future, some new wonder drug will come out that will provide complete cure from this illness is my prayer
.
'Thank you'…
" My Jyothis family "
Evg.Sunil Akkarath, Ex.Counselor / Psychotherapist
'Jyothis' ,the word itself says the ‘Ultimate Divine Service of God’.The almighty God chosen me to serve the humanity with Jyothis from Nov 2007 to Feb 2009.It was my blessed days which I came through my life. Through out the days I have seen the tears of many and God enabled me to wipe off their tears through prayers and psychological supports. We -Jyothis family, lived as one home by considering each others as our own brothers and sisters. We, the staff members worked together as a unit for the goodness of our patients, especially sisters who called and Chosen by God for this compassionate service and the other staff members who are very much dedicated to lead Jyothis as a successful organization. Sr.Elsius S.D (Chairperson) and Sr.Infanta S.D (Administrator) led us from the front without considering their ages, really they both are blessed servants of God who made Jyothis to become a blessed home to many. This is my prayer that almighty God give them a long life to bless many and get great reward from God on that great day.
The key person who led us for successful social activities is Sr.Doris.S.D who is now in the position of the Chairperson. She is really an anointed sister for the social activities who wiped the tears of many .She helped me a lot to grow in my carrier as well as in service. We worked together for the mentally distressed HIV people, especially by visiting their home and praying for them. I found a special quality in her to love and to commit herself for the poor and needy .Through her I learnt a lot and I hope, I can use that for my future service.
Another great person in Jyothis don’t know how to explain about Dr.Divya Mithal(Medical Officer),She is the person who really dedicated herself for HIV patients without considering her personal matters. Her availability is the greatest blessing for all our patients. She guided me and supported me to serve the patients in a proper way. I experienced her commitment, humbleness and respect toward others and to the service. We three (me,Sr.Doris & Dr.Divya) used to go to villages and given awareness about HIV to all the rural people in Mumbai. Her amazing teaching mentality to the rural and uneducated people is really appreciable. I hope almighty God continuously help her and bless her for her magnificent effort for the Jyothis.
I am very proud of Jyothis which is the exemplary institution for HIV/AIDS people in Mumbai as well as in India. And I am so much happy and great pleasure that I could be a part of Jyothis for its growth .I thank my almighty God who provide me a brotherhood relationship with Jyothis family - My Jyothis family .So this is my humble prayer that may the Lord keep and bless every sisters, staffs and all the inmates through his amazing love.
'Thank you'…
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