Sunday 27 February 2011

The 'miracle' kill or cure, by Amy Molloy. Sunday Times Magazine article, 27/02/11

by Tom Pilston

I was the victim of a stem cell swindle

Sarah Ezekiel , 45, who has motor neurone disease, travelled to a private clinic in America for stem cell therapy. Now, £15,000 lighter, with no improvement in her condition, she is warning others not to make the same mistake.


As the man in the white coat handed me a test tube and told me to hold it in my hands until the contents defrosted, then to inject it into my stomach, I willed my body to be responsive. I was terrified of leaving my two children, then aged six and three.

I was only 34 when I was diagnosed with motor neurone disease in 2000, while seven months pregnant with my second child. The symptoms appeared so suddenly — slurred speech, muscle wastage in my left arm — that I thought I’d had a stroke. However, tests confirmed MND and the next thing I knew, doctors were telling me I had two to five years to live. By this point, as well as a three-year-old daughter, I had a newborn.

My symptoms quickly worsened — within a few months I was unable to walk and I had to watch strangers care for my baby, which was heartbreaking. My marriage was disintegrating under the strain. I just wanted my life back.

Then my brother found me an article about a young MND sufferer in America who had an umbilical cord stem cell transplant and reported some improvement.

In hindsight I should have done more research, but my hands were too weak to use a computer by this stage, and when I asked my hospice doctor he simply wished me luck. It was such a new treatment that nobody seemed equipped to advise me.

On May 4, 2003, I arrived at the BioMark private clinic in Atlanta and handed over a cheque for £15,000. I felt incredibly excited — convinced I was going to make a full recovery — though doctors there warned it could take up to a year to work.

In the next few weeks I had a recurring dream that I was well again, cooking and spring-cleaning my house.
Seven months later I gave up hope.

Two years later the BioMark clinic was shut down by the American Food and Drugs Administration and fraud charges were filed against its directors for embezzling $1.2m from patients with incurable diseases, including multiple sclerosis and Parkinson’s disease.

Maybe I should have suspected, seeing as their slogan was ‘Medicine is a collection of uncertain prescriptions’.

Now I tell my story at MND forums in the hope that other sufferers will learn from my mistake. Ultimately I know desperate people, like me, will try anything. I just wish the unscrupulous people offering these treatments could be stopped. 

7 comments:

  1. tracey gibb hudson27 February 2011 at 08:29

    people will always look for a cure i have for my husband diahnosed with mnd in nov 2009 peg fitted feb 2010 ventilated via tracheostomy april 2010 he is now bed in bed and doesnt want to get out we too have a 3 year old ..but what can we do apart from our best .. Tracey

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  2. Fortunately for me I am a very sceptical person and, though I pray for a treatment, let alone a cure,I would wait for decent research data before believing anything. There are so many unscrupulous people out there preying on the 'desperate'!

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  3. This is a great article, however it is sad & tragic that those B^%$#@ thought it was ok to do this to you and others, through your article hopefully people will be more aware in the future thanks to you ((((((((( hugs))))))))))

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  4. Sarah, you've been on my mind so I thought I would check your blog to see if you've written something new.

    This post was disheartening, not only because of what you experienced, but because it may reduce hope others may have.

    Yet one thing I can't help but notice is, you are still here and inspiring me with your courage and moxie.

    You are a beacon of light. Please keep trying.

    Heartfelt (((HUGS))),

    Terri

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  5. Thanks for sharing this excellent and very nice blog marriage

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  6. My father is suffering from mnd and i am not having any treatment for this..i am thinking for stem cell therapy but at ur article its a failure...
    I pray God pls help us...and not dishearten us..

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