Terry Hoey the Chairman of the Palmerston Residents Association has spoken of his fears of XLP,HLH,EVB,he wants to raise the profile on these diseases and make our doctors and hospitals look further when they see a child with glandular fever.
Hospitals and doctors must be aware of the signs to look out for with these diseases, it not enough to see a child and think it is glandular fever,my grandson was ill for a few weeks on seeing the doctor was prescribed calpol when he had a very high temperature his mum and dad took him to the hospital. After tests were carried out he was diagnosed with glandular fever. after a period of time Cavan's doctor felt he should be recovering as he was not blood tests were taken and sent to Bristol children's hospital and Great Ormond Street. Cavan was then taken by ambulance to Bristol Children's hospital where they had diagnosed HLH from his blood tests. More tests on Cavan revealed EBV and XLP
XLP is passed on by the mother and it affects only the males in the family. There are a hundred families in the world who have it but they cannot say how many may have it where it has not yet been triggered. The more people who ask their doctors about XLP the more they will look into this disease.
HLH can affect both sexes and happens in children also, (HLH)is a rare disorder affecting young children at a very early age ,but is found in patients of all ages patients with active HLH too many histiocytes as well as lymphocytes (another kind of infection- fighting cell)both of which are so-called white blood cells that may cause inflammation (swelling,redness,heat,pain,and loss of function) these cells then begin to penetrate and accumulate in the good tissue and cause damage to a variety of organs some possible sites of involvement include:bone marrow,lymph nodes,liver,spleen,skin,membranes surrounding the brain,spinal cord,or,more rarely, the brain its self.
What Causes HLH scientists do not yet know all the complicated process involved in this disease. There are two major forms of HLH one known as primary form,is inherited the other is known as the secondary form, the disease develops secondary to inappropriate (abnormal)activity of the immune system this can occur after the use of immunosuppressive therapy and/or infections researched by (Histiocytosis Association Of America)
Terry wants to see all woman screened in early pregnancy to check if they carry the gene to enable the family decide the way forward.These diseases are dreadful and the treatment is huge terry wants all our parties to look at this and encourage our health service to be on the look out for these diseases
Terry Hoey has set up a Trust Fund for his grandson Called The Cavan Tommy Hoey Trust he would ask anyone who wishes to donate to the fund to do so by cheque to
The Cavan Tommy Hoey Trust (Ireland)
C/O 86 Palmerston Road
Sydenham
Belfast
Co Antrim
Northern Ireland
BT4 1QD email terryhoey@the-cavan-tommy-hoey-trust.org
Terry would also like to thank the people who have all ready given to the fund. We would ask anyone wanting to hold fund raising events for Cavan to please register with either of the trusts.
We would also like to thank all the people of Cornwall Cavan's home town of Bodmin for all the great work they are doing for the trust and the events that are going on to raise funds we have set up a trust in Cornwall it is
The Cavan Tommy Hoey Trust (Cornwall)
C/O Jen Gendall
6 Springwell Mews
Lovelane
Bodmin
Pl31-2QP email jen.gendall@the-cavan-tommy-hoey-trust.org
We are looking for sponsors at present as we will be setting up Cavan's new web site interested parties contact the organiser@the-cavan-tommy-hoey-trust.org
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