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.