Life-long… long life?

We are often asked a very simple but very deep question: “how long do I have to live?”

The question is usually asked by one of our friends who has found out that they are HIV positive.  Or it is asked by a relative or friend on behalf of a person who has HIV.

The answer used to be one of “well, it depends on how healthy you are now” and we used to usually talk about 7-10 years after the HIV was originally contracted.

That has all changed now.

Today, when I am asked the question, my response is: “I don’t know! You may end up living as long as I will – or even longer!”

We now have medications which do a good job at suppressing the HIV in most people.  These medicines are adding years, and even decades on to people’s lives.  And our hope is that further medicines will be developed as time goes on.

We are praying for a complete cure too.

But in the meantime – it also depends on whether I am willing to fight!  If I have HIV, then I need to look after myself.  If I need to start the Anti Retroviral Therapy (the main medications used to suppress the HIV virus), then I need to take it life-long!  Every day!  Without fail!

Taking this medication alone is not easy.  Its a life-long effort – and if I am taking the ART, I will need others to help me in this.   My family, my friends, my doctor and health helpers – people who will encourage me and pray with me…

But the hope is this – a life long medication – plus my efforts to fight the virus in me – will lead to a long life!

We are today working with people who have had the virus for over 15 years – and longer – and are living active, meaningful lives.

At the same time, we have seen people who have not taken care of themselves deteriorate and die.  HIV remains a real challenge.

What about you?  Or a loved one you have?  Don’t wait.  Get help.  Fight on.   We are all in this together!

Help

Your in a pit.  Things are pretty grim.  Everything that you have tried just doesn’t seem to work.

A thousand voices seem to be buzzing around in your head.

What will happen to me?  Why is all this going on?

One thing is for sure.

We all need help.

Life is pretty tough – and most of us have made mistakes.  Some of them are really big ones!

None of us can get through things alone.

We need others.  We need help.

At Jeevan Sahara Kendra we are a family of simple people who have hope.  Hope in God.  Hope in each other.  Hope in seeing very difficult situations change.

We don’t have magic cures.

We don’t have easy answers.

But we do have hope.

Real answers for real questions.

Over the last 7 years of working with people with HIV and their families in Thane, we have seen some very difficult situations.  We have cried with many a family as we worked with them through their personal tragedies.

But we have also seen amazing transformations.  Changes in situations where it seemed no hope was possible.

Please contact us and let us be part of your story.

We are here to help you and your loved ones.  But you have to make the first step!  We look forward to hearing from you!

World AIDS Day 2009

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!

World AIDS Day – every day!

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!

 

Send this boy to an orphanage

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!

Quacks

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.

New hands to serve! A new heart to share…

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.

 

Training our counsellors

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!

Freedom

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.

Medications save lives!

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!