Intracranial Hypertension Research Foundation
Rating: 5 stars 2 2 reviews 493
Disabilities, Health, Philanthropy
6517 Buena Vista Dr Vancouver WA 98661 USA
The Foundation has a 3-fold mission:--To catalyze and to directly fund new research that will lead to improved understanding of intracranial hypertension (IH), and to more effective therapies for those who have this disorder; --To educate the medical community and the general public with the facts about IH and to raise public awareness of the impact of this condition on the lives of those who develop it; and--To assist the IH community, including patients, their families, and their care teams, in better serving the medical needs of persons with IH. We serve all persons with IH, a chronic disorder defined as abnormally high cerebrospinal fluid pressure. The disorder can be triggered by a host of insults to the brain, including chemical, physical, and biological triggers, and often leads to loss of vision (blindness), significant neurological difficulties, and excruciating headaches. Those with IH are frequently disabled.
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Reviews for Intracranial Hypertension Research Foundation
There are limited doctors who understand intracranial hypertension. I was dealing with this process for about a year and a half; diagnosed that is anyway. My condition took a huge change with extreme vertigo, hand tremors,memory issues and a vast array of strange symptoms. Before April 2010, I had lost about 4 whole months. I lived day to day; but if it wasn't something huge, I wouldn't remember it. I had seen several doctors in my area; but none of them wanted to help with fixing the issues. Most told me that because I didn't fit "gold standards" that it was not the route to take and ultimately told me that this was my life and deal with it. It was in July of 2010 that I contacted the Research Foundation. I left a message and figured well, i probably won't hear back. Within a day I had a message on my voice mail with a number to call. I spoke with Dr. Tanne for over an hour and a half. It was such a relief; he validated what I was experiencing and directed me to Ohio State to see Dr Katz. Best phone call ever ! He gave me the key to unlock that huge locked door in front of me.
5 people found this review helpful
My daugher has IH and suffered for 5 1/2 years. The IHRF Foundation has been a great asset for us. They have wonderful people that can help us to have a knowledgable person to talk to about what is happening with our daughter. The support team is awesome.
I've personally experienced the results of this organization in...
I have had several occasions to talk with people within the organization. They have helped me to come to terms with some of the issues associated with my daughters condition and helped me to find other methods of help for her.
If I had to make changes to this organization, I would...
Have it more well known, I want everyone to know about this group and how great they are.
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How did you find this group?
Through the internet
What, if any, change in your life has this group encouraged?
They helped me to realize that how our daughter is treated medically and in school is up to us and we need to take a stand on her care and her life.
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