HIV/AIDS is a big problem – so big that many people are afraid to even say the word.

But it doesn’t have to be that way.

We can all make a difference.  It may seem small, like lighting a candle on a dark night.  But when the candles are all put together….

Jeevan Sahara Kendra looks after people with HIV/AIDS every day.  For us, every day is World AIDS Day.  But tomorrow – on the 1st of December we will be reaching out in a special way to spread the message a little further.

Our small team will split up into mini-teams to participate in the following events:

1. The AIDS Rally in Thane city organised by the Thane District AIDS Prevention and Control Unit.  The rally is to start at the Thane Civil Hospital and end up at the Gadkari Rangathan at Talao Pali.  We will be hosting a small stall at this venue too.

2. Throughout the morning three of our mini-teams will fan out to do outreach to Auto-rickshaw drivers to tell them about the HIV counselling and testing services that we have at JSK and that are available at the Thane Civil Hospital.

3. One team will conduct two HIV/AIDS awareness programmes for employees of a corporate house in Worli

4. Another team will hold an HIV/AIDS awareness programme for the parents of a balwadi programme in Thane

5. In the afternoon, three teams will meet people with HIV in the homes – through our on-going confidential visits to assess their health and supervise their medications.

6. In the morning, Dr. Sheba and the centre team will be  meeting people with HIV who come for checkups and follow-up on treatment at our JSK centre.

7.  Our counselling team will be meeting people who may have HIV who will come to our centre for counselling and testing at the JSK Integrated Counselling and Testing Centre.

At the end of the day – we know that the problems of HIV/AIDS will still be there.  But we also know that we will have lessened it to at least a small extent.  You can too!

We have just entered November.  For those of us who care about people with HIV, this means a month of preparation towards Dec. 1st – World AIDS Day.

Around the world, people remember those who are living with HIV/AIDS – and take time to remember those who have died of AIDS – on World AIDS Day.  Its a sober time, a time of reflection, a time to think and pray and review what we are doing personally to make a difference in the world-wide challenge to overcome the ravages of the disease.

For us at Jeevan Sahara Kendra, every day is World AIDS Day.  Every day we meet people who have HIV.  And encouragingly, we are seeing people live longer and fuller lives than ever before.  HIV is a disease.  Its harsh at times, but it can be fought.  With a little help from family and friends and with a lot of help from our loving Father God – we know that we can see real victories.

What are you doing about HIV?

Am

I

Doing

Something?

Do you want to do something with us?  Do you want to see a different Thane city – a city which actually cares for people with HIV/AIDS living here?

Contact us at 9321112065 and lets see what we can do together!

When parents die of HIV – what happens to the children?

We have had a number of children brought to us by relatives and friends.

“Please take this child and put them in an orphanage” is the request.  “We cannot care for the child – take him or her to a place where the child will get food and clothing and education.”

Last week a 16 year old boy was brought to Jeevan Sahara Kendra.  He has HIV.  His parents have died.

He is not physically ill – but the relatives asked us to put him in an orphanage or ashram.

We told the relatives that we could not – and would not.

Our colleagues in other organisations who do run orphanages are over-burdened with the number of children they are looking after.  They are under-staffed.  And most are already working to get their wards out on their feet by the time they turn 18 – so no one would take a 16 year old boy in the first place.

We also feel strongly that God has placed family first to look after orphans.  In India we are blessed with big families.  To have a child looked after by an uncle or aunt, or distant cousin – whatever – is always better than being looked after by strangers.  Children and young people crave identity.  They need roots and histories that they can make their own.   Just ask a person who has grown up in an orphanage ‘where are you from’ – and see the often painful search for words to express their identity.

Most of all, children need love.  Clear affection.  Models of what parents do.  Real family situations to grow into later in life.

Jeevan Sahara is committed to helping people help their orphaned relatives – by exploring ways of supporting their care at home.  By seeing what kinds of fostering arrangements (esp. with relatives) can be made.  By meeting regularly with children and adolescents infected and affected with HIV.

There are no easy ways out – but sending a child to a lifetime of institutional care – should be only done in the last resort.

The relatives of the 16 year old boy were disappointed with our response to them.  We hope to keep engaging them in the coming weeks and months – and trust that this 16 year old will live out a fulfilled adulthood too!

Every one wants to get better.

People who have HIV are no exception.

Despite years of research and colossal sums spent world-wide, we still do not have a ‘gold-standard’ HIV cure.  Such a a set of medications would be taken for a specific period of time – would totally knock out the HIV from the body – and which could then be stopped without the virus showing up again.

In the absence of a ‘gold standard’ cure – we are pleased to say that we have a series of medicines which are quite effective in suppressing the virus – and allowing the body’s immune system to function normally again.  The challenge with these meds, however, is that they have to be taken life-long.  These Anti-retroviral therapy (ART) drugs demand high levels of monitoring and adherence.  A person who starts on ART must take the meds at least 95% of the time for them to work properly.  Anything less can lead to resistance.  Most of us don’t even take a 5 day course of anti-biotics.  The challenges of taking ART drugs life-long is daunting.

Enter the quacks.

There are sadly plenty of people who make money of other people’s misery – and in providing false hopes.   Any number of charlatans claim ‘cures for HIV’ through various medical systems: ayurveda, unnani, homeopathy etc.  Some of the cures involve various incantations.  Others are said to be based on herbal medications.  All are based on fantasy.  None have been shown to cure – over time – across populations.

Each person with HIV wants to be fully cured.  It is disheartening to hear medical doctors repeatedly say that ‘no known total cure’ is available at this point.  Then when someone comes up with a statement that a cure is possible after all, when neigbours and friends urge them to ‘give it a try’, when family members sacrifice money to be able to ‘take the cure’ – many people with HIV end up taking the plunge into such therapies.

We wish we could have a happy end to this story.  The figures who are behind the fraudulent advertisement seen on a local train (above) are still around.

Please contact us if you have questions about treatment for HIV/AIDS.  There are real things that can be done.  There are cost effective ways to live long and healthily.  There are no short cuts though!

At Jeevan Sahara Kendra we have had over 1000 contacts in the last 7 years.  We are currently looking after about 200 friends with HIV in their homes.  We can help with real-life advice – based on working with real people – and seeing real change.

Don’t believe the quacks.  The truth will set you free.

One of the great things about the Jeevan Sahara Kendra family is that we have people from almost every part of India.

HIV affects every community, every caste, every economic group.  And in Thane city, besides our many Marathi brothers and sisters with HIV, we also meet people from all over our country – who are living and working here – and who are HIV positive.

We are glad to have staff from Maharashtra, UP, Karnataka, Tamil Nadu and Orissa.  Currently we also have UBS interns from W. Bengal, Tamil Nadu and Kerala.

Our family just got a little bigger – JSK is happy to announce the joining of Sasmita Rani Aind .  Sasmita is a are nurses and has joined us as an answers to prayers – all the way from Orissa.  She has helped bring our nursing strength up to speed and we are now able to admit sick people with HIV again for curative care.  Besides her training and experience – Sasmita also brings her caring hands and tender heart.

Welcome aboard!

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Post script:  November 2009

Sadly, we also have to report that another nurse who came with Sasmita and promised to work with us has gone back on her word and returned to her home in Orissa.  At JSK we have a sad little list of people who say “Praise the Lord” and give commitments to serve but then go back on their promises.  While we wish them well in future endeavours we know that true prosperity is based on integrity.   In the meantime, we have fixed our eyes to continue to face the challenges of caring for people with HIV.

At Jeevan Sahara Kendra, we are proud of our staff.  Hard working, big hearted men and women they are.  United by a desire to help people with HIV/AIDS and their families.  Deeply committed to the work and driven by more than just a job to pass time – each one knows that they are called for this work, and each one lives through the day to day challenges relying on God.

At JSK we are also happy to say that a number of our staff are living with HIV themselves – and know first-hand the challenges of what it means to wake up every day and know that their bodies are fighting with the virus.

People are by far our most valuable asset.  Our staff team shows this every day.  Through their interactions with others.  Through meeting people in their homes.  Through listening to our friends with HIV – whether they are just chatting about the weather – or whether they are sharing something very deep and personal.

This week three of our seasoned staff are participating in the Induction Training for Counsellors for the Public-Private Partnerships in running Integrated Counselling and Testing centres.  Simply put:  our staff are getting additional training.  It is training given by the government as we are now an HIV counselling and testing centre that is being certified and supported by the Maharashtra State AIDS Control Society.

Each one of our three staff who are attending the training have met many, many people with HIV/AIDS and have already shared and helped them in marvellous ways.  But we want the process of learning and improving to continue – and are glad for our team members to participate wherever possible in order to upgrade their capacity – and improve our serve!

We celebrate our country’s freedom this week.  Sixty two years ago, our nation emerged from British rule and set about the great task of self-rule.

While so much has been done in these six plus decades, we know that there is still so much more to be done in Nation-building.

We are proud that the government is providing free Anti-Retroviral Therapy to people with HIV/AIDS.   We are happy that our health system is encouraging people to get tested for HIV – and that many children who would be born HIV positive are being protected through the medications given to pregnant women with HIV before the delivery.

At the same time we know that so much more needs to be done.

So many in our nation who have HIV are still so afraid to even find out about their status, that they do not seek help in the first place.

So many, who have some access to government resources are bound by their own broken relationships.  By feelings of despair and hopelessness.  By habits that they cannot break out of – some seeking solace in the bottle, others in pornography and serial sexual relationships.

I got a call yesterday from a man with a good job.  A man who to everyone’s outward appearance is successful.  But a man who keeps giving in and visiting prostitutes for sexual pleasure.   He hates what he does – but seems powerless to overcome.

Let us celebrate freedom day this year with real freedom.  Freedom from the habits and actions that we loathe in ourselves.  Freedom from the things that we find ourselves doing over and over again, and have tried to change many a time, but still wake up at the same spot.

We know that it is not possible to change on our own.  If it were, we would all be perfect long ago.

We need God in the picture.  A higher power who is loving and caring – and who is patient enough to help us forward.

We need each other.  We need to be open and honest with ourselves – and with each other.  Keeping each other accountable.  Moving forward in mutual help and support.

Our country did not gain freedom by the actions of a single person – no matter how great our leaders were.  The freedom movement took root when thousands upon thousands acted.  Small, individual – and often costly acts – which lead to the change that we have enjoyed over the past 62 years.

We at Jeevan Sahara Kendra are committed to seeing the process of freedom move forward.  Step by step.  We want to see ourselves move from areas of bondage in our lives to lives lived in self-control and freedom.  Freedom is not giving in to every impulse – but rather being able to humbly master our thoughts, actions and responses.

We welcome you on this journey with us.

So you have HIV.  Or someone you know has it.

Its hard.  And scary.

A lot of people just lose hope.  They have heard that “AIDS is incurable.”

Well here is the truth of the matter: we still don’t have a ‘gold-standard’ cure for HIV.  That means we don’t have a course of medication – like we do for malaria and TB – which you take for a certain period of time and then you can stop it because the virus has been completely defeated.

But what we do have is real medicines that really help.  They are called Anti-Retroviral Therapy (ART)  Medications and are available free of cost from the Government ART centres in Maharasthra (and a number of other states too).  These medications need to be taken life-long, every day and without missing doses.

But the benefits are huge.  We have over 100 friends who are HIV positive and are taking ART.   Taking ART helps rebuild immune-systems that HIV has damaged.  As the immune system recovers, people get ill less often.  They are able to work and continue with other parts of their lives.

We are so grateful to God that our government is providing these medications.  It has made such a difference for so many.

If you have HIV, don’t try and ignore it.  Find out what your health status is now.  See what your CD4 level is.  You may need to start on ART in order for you to live longer and better – even if you don’t have other illnesses at this point.   If you have a friend or loved one with HIV, make sure that they get examined and started on appropriate treatment if they need it.

The only time HIV is completely incurable is after a person has died.  Find out about the medications – and start using them at the right time!

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If you have any questions about ART, please contact us.  All inquiries will be treated confidentialy of course!

One of the scary things about HIV is that it seems like the end.

“What kind of a life will I have if I find out I have this disease?”

“What will happen to me?”

“How will others react to me?  How will they treat me if they find out I have HIV?”

“What hope do I have if I have HIV – it’s incurable isn’t it?”

These are all real questions and they bring much fear with them.

The good news is that there is hope – and that it is never too late to start.  No matter what situation you may be in.  No matter how messed up my life may be.

It is possible to change.  It is possible to move out of whatever we are in now.  It is possible to live a life that is better than what I see around me today!

HIV/AIDS is a disease.  Its a virus that attacks our body.  Its not a curse from God.  Its not a direct punishment for anything.

At Jeevan Sahara Kendra, we have now come in contact with almost 1000 people who have HIV or were very likely to have the disease.   We have seen all kinds of people and notice one important fact:  those who try to find out the truth about themselves and their condition are the ones that survive.

On the other hand we have seen many people with HIV who try to hide, who don’t want to know about their condition, who avoid dealing with the realities of their lives.  Sadly many of  these friends with HIV are not with us anymore.  They have died because the disease worked its way to weaken their immune system – and they did not do anything about it.

The key is being willing to do something.  Willing to start the change.  No matter how bad the situation is – there is always hope!

A small example:  a couple we know found out that they had HIV.  The husband became very sick.  He was so sick that he slipped into a coma.  His wife was advised by the man’s brother to take him to the Christian Medical College Hospital in Vellore.  Many people told her it was a waste of time and money – that her husband would never survive.  She persisted and the doctors there treated her husband.  He came out of the coma.  Bother were started on ART medications.  Today both are alive and well – 7 years after this happened!   As sick as her husband was, he was not dead yet.  There was hope and his wife worked on that hope.  God answered prayers and instead of being a widow, this lady has a husband still with her!

Whatever the situation you are in.  Never, never, never, never give up!

Do contact us if there is anyway you would like to be helped – especially if you or someone you love has HIV/AIDS.

There comes a time when each one of us has to face the truth.

For some of us, it is when we get a laboratory report – we have been tested for the HIV anti-body.  The test result tells us that our body has the HIV virus.  We are HIV positive.

What now?

What shall I do?  Where should I go?  Who should I tell?  What will happen to me?  To my loved ones?  To those who I dream about looking after?

So many questions crowd into our minds.

We have heard that HIV is a dreadful disease – but never thought I would have it – or someone that we love has it.

Stop.  Take a deep breath.  Think.  Pray.

It is really, really important not to give up HOPE.

Whether it is the doctors and social workers at Jeevan Sahara Kendra, or dedicated people in other places – there are people who love you and want the very best for you.

HIV/AIDS is a serious condition – lets not deny this – but there are many things that can be done these days.  At Jeevan Sahara Kendra we have been working with families who have HIV for 7 years now – and have seen some wonderful transformations take place.

The important thing is not to give up hope.  And not to give in to despair.  To fight against the lies that whisper in our ears: ‘what’s the use?’ ‘nobody loves me’ ‘I am a failure and a hindrance to others’ and many such lies.

Living with HIV/AIDS is not easy – but it is being done – by many wonderful and courageous people all around us.  We want to help you if you have questions.  Please contact us at any time – you are valuable and precious.

If you do not have HIV, or do not have someone with HIV in your family – would you consider ‘adopting’ someone wtih HIV into your family?  You can pray for them – meet them and bless them in so many ways.  Besides the help that our brothers and sisters with HIV need – we all need to be thanking God for His kindness to us each day.   Please contact us about how we can help facilitate this for you.

We all need hope.  To move forward.  To live today.

Live in Hope!

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written on Good Friday 2009