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X-Linked Lymphoproliferative Disease

What is X-Linked Lymphoproliferative Disease?

X-Linked Lymphoproliferative Disease is a rare genetic immunodeficiency disorder characterized by an underactive or overactive immune system.

 

X-Linked Lymphoproliferative Disease is a rare genetic immunodeficiency disorder characterized by an underactive or overactive immune system.
0.1http://www.orpha.net
Synonyms for X-Linked Lymphoproliferative Disease has not been added yet.
Cause of X-Linked Lymphoproliferative Disease has not been added yet.
Symptoms for X-Linked Lymphoproliferative Disease has not been added yet.
Diagnosis of X-Linked Lymphoproliferative Disease has not been added yet.
Diagnostic tests of X-Linked Lymphoproliferative Disease has not been added yet
Treatments of X-Linked Lymphoproliferative Disease has not been added yet.
Prognosis of X-Linked Lymphoproliferative Disease has not been added yet.
Tips or Suggestions of X-Linked Lymphoproliferative Disease has not been added yet.
References of X-Linked Lymphoproliferative Disease has not been added yet.
Info seek and share Created by adbianchi
Last updated 21 May 2013, 09:01 PM

Posted by adbianchi
21 May 2013, 09:01 PM

Hi all I am a family friend of 10 yo affected boy currently hospitized for severe diarrhea (continuos episodes up to 30 discharge per day) which seems unstoppable. Doctors are confused and situation critical. Nothing seems to work. Has anyone had any past experience of similar symptoms and , very very important, is there anyone able to indicate a medicine or procedure which worked well to stop diarrhea ?? Parents are desperate and doctors have tried various therapies but nothing seems to work. Confidently looking for some info.. thanks in advance for anything you may tell me. Dany

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looking for other people suffering with this rare condition x-linked lymphoproliferative disease and how they have managed the care.
I am mother of 3 sons and a daughter. Our third son has diagnosed with xlp without one of the genes which are related with xlp. the problems started with the EBV virus. Since that moment our son ha...
My name is Denis and my wife's name is Yekaterina. We lost our eldest son in December of 2012 to XLP. After our son passed away from EBV doctors suspected that XLP caused this death. We are in proc...
Friend of affected children
I am the mother of 2 sons with XLP. My younger son, Brandon, lost his fight in 2002 at the age of 10. My older son Logan is 21 now and not doing well. He had a BMT in 2004 and never fully recove...
I am the mother of 2 boys Hunter age 7 and Parker age 3. For 5 years they have been lucky enough to be in a research study at the National Institute of Health hoping to receive a diagnosis for thei...
I am the last survivor of 6 in my family with XLP. My uncle was the oldest survivor @ 42 years. He passed in 03. My brother passed @ 27, and 3 uncles in the 1960s passed away @ 4, 8 and 18. I am no...
I am 34 y/o only sister of 2 brothers who died of Duncan Disease. One died when he was 4y/o in 1974 a year before I was born. The other lived until he was 20y/o and died in 1991. We didn't know a...
Leukemia, sarcoidosis, and many other autoimmune diseases. Chronic lymphoproliferative syndrome
I am a brother of a large familiy. Three of us have died when they were children, before we all know about this disease. Another brother has died some days after an narrow bond transplant, when he ...
I am the Father of 4 boys with XLP and the Chairman of the XLP Research Trust -established to provide support for families affected by XLP any where in the world. We live in the UK and each of my s...

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Info seek and share

Created by adbianchi | Last updated 21 May 2013, 09:01 PM


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