When Awareness Fails: A story of Hope

Free Thinking Author


I am part of a “Rare” group of people.

IH-ribbon click image for source

I am 1 in 100 000 people, and I have a Rare Disease.

There are two different kinds: Chronic and Secondary IH.

Intracranial Hypertension:

A short overview-

(IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. (Old names for IH include Benign Intracranial Hypertension and Pseudotumor Cerebri).- exert taken from The IH Foundation.org

Very little is known about this disease and thousands of people are going without proper care. Many Doctors don’t know enough, add on the fact that there is no cure and things begin to go from bad to worse.

What is IH?

Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. “Intracranial” means “within the skull.” “Hypertension” means “high fluid…

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About jigsawtree

Hi my name is Terence Hoey I am CEO of The Ultra Rare Disease Disorders & Disabilities Foundation LTD a non for profit charity our address is Palmerston Road Sydenham Belfast Co Antrim Northern Ireland BT41QD

Posted on May 28, 2015, in Uncategorized. Bookmark the permalink. Comments Off on When Awareness Fails: A story of Hope.

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