If you are reading this for the first time, chances are you have never heard of the word Histiocytosis. You are not alone. Most oncologists and haematologists only ever learn about it when they are studying in Medical School. These doctors will only ever diagnose a few patients each year if any.
This gives an indication just how rare Histiocytosis is....
Poem On Histiocytosis - A Rare Disease
Histiocytosis What is that? You may ask. It is a rare blood disease,that destroys as it attacks.
It can affect any part of the body, from skin, organ, blood, and bone.
No one knows where it comes from, the cause is yet unknown
It acts just like a cancer, it'll take a life, you see. There is no simple answer, oncologists are who you need.
Chemotherapy, blood transfusions, transplants, and steroids;
These are treatments that are needed and the patients can't avoid.
We need to find a cure, to defeat this rare disease. But, without the proper funding, our goals we'll never reach.
Government won't fund it, not one single penny.
They say it's not that common, that it doesn't affect that many.
We need doctors to do research, if we're going to find a cure. No one is immune from this, there's always more and more.
Many have already lost their lives and many more will too.
If we are going to change the outcome, it starts with me and you.
Help us in our fight, against Histiocytosis. Join our cause, give a donation and pass on the awareness.
I thank you for your help, it means so much to me.
I know what it's like, first hand. My child has this rare disease.
Written and Published with consent by B. Kaufman (mother of a Histio patient)
This site will focus on Haemophagocytic Lymphohistiocytosis (HLH), for reasons that will become obvious later on.
Histiocytic disorders are so rare that they are classed as orphan diseases. Only a few people are diagnosed and therefore the government does not recognise it as an area that requires funding. Independent charities depend solely on donations which are then put towards future medical research. The aim of this site is to help raise awareness and support the registered charities by promoting awareness as well as a further means of generating donations. We hope our site will also give hope and inspiration to others diagnosed and battling against Haemophagocytic Lymphohistiocytosis (HLH).
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Join our facebook group 'histiocytosis Research Trust 2011'