Laurenna is 23 years old and has Type III Gaucher disease, here is talks about the challenges that she has faced since her diagnosis in 1986;
My name is Laurenna some of you may know me or might have heard of me. I would like to share my story with you. I was born in 1984 and in January 1986 doctors discovered I had Gaucher disease; my parents were told and they had no idea what it was. The doctors at Kings College explained that there was no cure and that my bones would deteriorate and I would be in a wheel chair by my early teens and dead by my late teens.
As we were leaving a doctor suggested we contact the Westminster Children’s hospital where we met a very nice doctor they called ‘The Professor’. He explained to my parents that all they could offer me was a bone marrow transplant (BMT) and that the risks were high but that this was my only option. There wasn’t any enzyme replacement therapy then.
In March 1986 all of my family were tested to see if they were a match for me but none of them were suitable donors, so we asked the Anthony Nolan Trust for help. They found one possible donor out of 40,000 people.In August 1986 my spleen was very large and I was unable to walk so I had a splenectomy, this operation had to be done anyway so that I could have a BMT.
In September 1986 my Gaucher disease had accelerated and doctors told my parents that I must have a BMT. We went to the Anthony Nolan Trust and asked to use the donor they had identified as a possible match, even though with this random match the success rate was low.
Preparing for my BMT
In 1986 I went into hospital to prepare for my BMT, they bathed me in a special soap and placed me in a small cubicle. This was to be my home for two months. I was given many drugs for my BMT, these made me loose my hair and stopped me from eating. In January 1987 we found out that the BMT had failed and that we needed to find a better donor. A few months later in April ‘The Professor’ retired and new doctors arrived but still no donor. Throughout 1987 and then in 1988 new doctors came to the hospital but many of them left as the Government were closing down hospitals and Westminster Children’s Hospital was one of the hospitals they wanted to close.
My second BMT
In 1989 we met a new doctor, he wanted to give me a second BMT and a new donor, a woman was found. My first donor had been a man and we hoped with the second donor being a women this may give me a better chance. In June 1989 I prepared for my second BMT, the operation took place but things didn’t go well. Nobody knew why I wasn’t getting better and I had to stay in hospital for five months.
In January 1990 I went home but couldn’t go to school so I had to have home tuition. By September 1990 I was able to go to school for two or three days a week but all of the teachers knew that if anyone in the school had a bad infection I had to be sent home and have an injection. During my primary school years the teachers understood that I had problems, that I was slow at doing things. When I was 11 years old the teachers said that I was not capable of going to secondary school, but I did go and I did struggle but I had a teaching assistant to help me. At the age of 14 I was preparing for my GCSE’s, again the teachers said I couldn’t do them, but I achieved six out of the seven I took. I am now at college and on a Saturday I work in a shop called New Look’ for three hours.
Life is Good
I know some of you think that you have been dealt a bum card in life but I have come here to tell you my story to show you that life isn’t that bad. You should all be happy to be alive and living life to the full despite everything. Even though I am epileptic now and take a lot of medicine, it really helps.
Before I go I would just like to thank someone who has helped me stand here today and tell you all about myself. Back in 1990 a young doctor did stay at Westminster Children’s hospital and helped me through my second BMT, even though the hospital was going to close. He never walked away, he found me a new hospital and looks after me today. You all should like me be glad that he looks after you all, I am of course talking about Dr Ashok Vellodi.
The UK Gauchers Association are delighted to announce that the fund has now been expanded to provide support in other areas of education. Find out more here