Lymphopoliferative Syndrome (XLP)

As chairman of the Palmerston Residents Association I thought I was a Real Fighter for good causes  I did not for one moment think I would Be fighting for a cause that would be so close to both my wife and our family's heart our grandson has XLP,HLH,EBV,.During the past few weeks we have been in England to be close to him and his mum Debs and dad Jason and his sister Maeve they all live in Cornwall in a small town in Bodmin,our grand son had been ill for some weeks we thought he had Glandular Fever and started to get worse. My ... Read Full Story

As chairman of the Palmerston Residents Association I thought I was a Real Fighter for good causes  I did not for one moment think I would Be fighting for a cause that would be so close to both my wife and our family's heart our grandson has XLP,HLH,EBV,.During the past few weeks we have been in England to be close to him and his mum Debs and dad Jason and his sister Maeve they all live in Cornwall in a small town in Bodmin,our grand son had been ill for some weeks we thought he had Glandular Fever and started to get worse. My ... Read Full Story

As chairman of the Palmerston Residents Association I thought I was a Real Fighter for good causes  I did not for one moment think I would Be fighting for a cause that would be so close to both my wife and our family's heart our grandson has XLP,HLH,EBV,.During the past few weeks we have been in England to be close to him and his mum Debs and dad Jason and his sister Maeve they all live in Cornwall in a small town in Bodmin,our grand son had been ill for some weeks we thought he had Glandular Fever and started to get worse. My ... Read Full Story

Hi everyone would you think in this photo that I could have XLP,HLH,EBV, that's the problem you don't know Because it is one of my genes that is wrong and the problem is not everyone in the world knows what XLP,HLH,EBV,is either I don't want to be cheeky DO YOU KNOW WHAT THEY STAND FOR I don't think so because this gene has only been found out in 1997 and this gene is very smart as it takes on the face of different illness mine started with Glandular Fever that would not go away. PLEASE HELP ME AND THE CAVAN TOMMY HOEY TRUST GET ... Read Full Story

X-linked lymphoproliferative syndrome ( XLP ) is an inherited disorder of the immune system that affects males. XLP is characterized by an abnormal immune response to infection with the Epstein-Barr virus (EBV). This is a common virus in the normal population, which causes infectious mononucleosis (“mono or kissing disease”). In normal individuals, EBV causes no long lasting ill effects. In individuals with X-linked lymphoproliferative syndrome , there is a mutation (mistake) in the XLP gene, SH2D1A/DSHP/SAP. This gene helps control the immune response to an EBV infection . As a result, males with XLP who are exposed to the EBV virus can have life-threatening ... Read Full Story