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14th January 2018
Unfortunately, we are sad to announce that after 20 years in existence, HUSH has ceased. We would like to thank everyone for their help and support..... read article
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Testimonies


Mrs Jacky Thomas
16th March 2005

My daughter contracted E.coli O157 following a weekend away in the country during November 1994 - she was four and a half years old.

Over the weekend she developed diarrhoea, which became progressively worse over the following week. I was taking her to the loo every 15 minutes. She was not eating or drinking and had stopped urinating. She was becoming very weak, lying in bed and barely coherent.

I took her to the GP surgery three times that week. At that time there was very little awareness of E coli - I had never heard of it. Our GP was helpful and sent us to the hospital on the fifth day of illness. It was an intensely frightening experience for us all. I recall that my daughter was sent for an x-ray of her abdomen - the doctor mentioned a mass - I immediately thought she had cancer!! (And I work in the health service). The words used in hospitals are frightening. At first the wrong treatment was given - bags of fluid that my daughter was unable to excrete (since as we now know her kidneys were not working). The endless blood tests were a terrible trial not only for my daughter (who became and still is at age 14, absolutely terrified of needles and had all veins- hands, feet, elbows, explored with staff holding her) but also for me trying to comfort her and explain why I was letting these people do this to her. It was very, very hard. The other major trauma for my daughter was that she had started to have a terrible thirst and all fluids were now banned. I was informed that my daughter could suffer major organ failure including brain damage- this unfortunately was not discussed sensitively, but rather harshly.

The diagnosis was finally reached after four days in hospital and she was then transferred to Great Ormond Street renal unit. What a relief! Now we were with staff who were able to explain the condition and to spend time reassuring us. Although the situation was still very serious at least we were with the experts and I was given a leaflet on HUS. My daughter was allowed to have a drink and food for the first time in 9 days. We still had the blood tests, a naso-gastric feeding tube to deal with and a blood transfusion.

Amazingly, literally a few minutes after the consultant asked the nurse to prepare my daughter for dialysis, she asked for a potty and produced! Everyone was very surprised and pleased.It was ten weeks before she returned full time to school, fully recovered.

It is now ten years on and I wish that HUSH had been around then as it would have been really helpful to have someone who had experienced this to talk to.

Tips on how to get children over the fear of blood and needles would be great - is there an answer? My daughter did have some follow up but after the second appointment asked me not to take her to hospital again I agreed. She has not had to visit her GP in the last ten years but having recently contacted HUSH and following their advice that children who have had HUS should attend follow up, my daughter is under-taking some basic tests - reluctantly.


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16th November 2005

My daughter Caitlin was diagnosed with E.coli O157 then developed HUS. She was on 24 hour dialysis for 2 weeks at Bristol Children's Hospital but remained quite poorly for some time with diffe.... read
14th October 2005

My son, who was two and a half at the time, caught E.coli from some  unpasteurised cheese that I had bought from a cheese stall, not kno.... read
16th March 2005

Like many people I first heard of E.coli O157 when an outbreak in Wishaw (central Scotland) during 1996 claimed the lives of 20 elderly people - my friend's two grandparents included. However, once.... read
16th March 2005

My daughter contracted E.coli O157 following a weekend away in the country during November 1994 - she was four and a half years old. Over the weekend she developed diarrhoea, which became p.... read
9th November 2004

I contacted HUSH in 2002 when I realised that my daughter had a life-threatening disease, and I had no-one turn to. Suddenly there was a life-line. I was in contact with people who had been through.... read
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