Hi, my name is Pia Kayo. My daughter, Kathleen, was diagnosed with Intracranial Hypertension (aka Pseudotumor Cerebri) three years ago, at the age of 17. At the time of her diagnosis, we had never heard of this disease – the symptoms of a brain tumor without the tumor? We didn’t know that was possible. We found out that only 1 in 100,000 people worldwide get it, and there is no cure. This is a debilitating, very painful disease. Read below for the details. We've been fighting for awareness, medicines that work, and (our dream) a cure for this rare disease. This past November, at age 20, Kathi started a foundation, The IHope Foundation, to do just that and to help fellow IH sufferers get the help they need. You can find her foundation at www.theihopefoundation.net and at facebook.com/theihopefoundation. We are asking for June 25th to be declared as IHope Day and celebrated every year. On this day, we want to turn the world blue and green (IH colors) and raise awareness so that IH won't be so rare and we will have a better chance at finding an effective treatment and a cure. We had our first IHope Day this year, and over 1,000 people worldwide participated. You can check it out on Facebook by visiting the event link on her foundation page. We want to grow this day and make it official. We need your help.

An estimated 1 in 100,000 people worldwide have been diagnosed with Intracranial Hypertension, a disease for which there is no known cure..

Intracranial Hypertension is a chronic illness that causes severe debilitating head pain, vision loss, dizziness, nausea/vomiting, tinnitus, parasthesias (numbness in the hands, feet, and face), rhinorrhea (spinal fluid leakage from the nose during episodes of high intracranial pressure), fatigue, depression, endocrine problems, memory difficulties, and exercise intolerance.

This illness affects men, women, and children of all ages and ethnicities.

It may take years to receive a diagnosis of Intracranial Hypertension and medical
professionals frequently are inadequately educated in the diagnosis and treatment of Intracranial Hypertension.

Increased awareness and expanded knowledge of the realities of life with Intracranial
Hypertension will allow the community at large to better support people who struggle with the challenges of this chronic pain disorder.

The Intracranial Hypertension Research Foundation and other groups including The IHope Foundation in the United States and the IIH UK Foundation in the United Kingdom have joined together to promote Intracranial Hypertension awareness and support -- including improved education, diagnosis, research, and treatment. The IHope Foundation is urging Intracranial Hypertension patients and their supporters, healthcare providers, and the general public to demonstrate their caring by sharing the road patients walk, the facts about Intracranial Hypertension, and ever-growing awareness about the etiology of this disorder and potential treatments.

The community's focus on Intracranial Hypertension and its impact on patients' lives
will help guarantee hope for a better future for people with Intracranial Hypertension.

Please help us spread the word. Help us spread HOPE for a cure for Intracranial Hypertension.

Thank you.