What do we do? We help you to adapt to life with IIH, by providing you with practical advice, help and the information you need to understand and live with this condition. IIH doesn't discriminate and neither do we, so wherever you are in the world, we can help you.
How can we do this? We too have experience with IIH, we have found ways to live with this condition and we want to share them with you.
What can you expect from I Have IIH? We offer you constructive advice based on experience and success. Although we do offer information on the various topics from authorities on IIH, we primarily aim to help you to achieve a more positive and productive life with this condition. We don't put a time limit on your membership, and actively encourage you to keep coming back, just to let us know how you've been getting on, as well as to share your support, coping strategies and friendship with other members.
We are members of the RARE Foundation Alliance.
If you have any enquiries please use the contact button to contact us.
Our circular logo in traditional IIH colours represents the Global IIH community of men, women, children, family and friends in a supporting and positive way.
By definition a "Kindred Spirit" is someone who "thinks and feels the same way as another person". Having a condition such as IIH can make you feel isolated and misunderstood, but not here. Here you can connect to people who know how you feel and what you're going through.
We know you want a better IIH life and we want to help you achieve it.
...we'll always be here when you need us!
Donations Fundraising and Awareness
You can help the IH Research Foundation with valuable research by simply clicking on the donate button and donate.
"The IH Registry is run in partnership with Oregon Health & Science University in Portland, Oregon. It is the first and only patient registry of its kind for chronic intracranial hypertension in the world. It represents the largest collection of medical data on chronic IH patients ever compiled and continues to grow. The Registry is international in scope, with patients enrolled from 26 countries; it also welcomes inquiries for collaborative research from researchers outside the US.
It is open to any patient with a confirmed diagnosis of idiopathic or secondary intracranial hypertension, regardless of nationality or country of residence and it is FREE. Any qualified physician researcher or basic researcher from any country in the world is invited to use and receive de-identified medical data once they have confirmed qualifications and receive IRB approval for the research project. The IHRF communicate with Physicians and Researchers globally." The IH Research Foundation
If you are in the UK you can help fundraise for the I Have IIH Foundation by visiting our main website
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Mon Feb 08, 2016 3:33 pm
Living with IIH
Pseudotumor Cerebri (PTC) Benign Intracranial Hypertension (BIH) Idiopathic Intracranial Hypertension (IIH) Secondary Intracranial Hypertension (SIH).
You'll all have one and the same condition. It is known mainly as the latter one as there is no known cause, hence the idiopathic. Confusing we know! If you've just been diagnosed you can get together here with others to talk over how you feel about it, and ask the long-term sufferers lots of questions and advice on how to deal with it.
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Sat Feb 06, 2016 3:32 pm
Recommendations For You
Useful links to the topics and websites. ALL links are from reputable sources only. We are not responsible for the content on these websites, they are provided ONLY for information. It is still important to consult a medical professional.
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Tue Oct 27, 2015 10:13 am
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|» Rare Disease 2016|
by medmisfit Mon Feb 08, 2016 3:33 pm
» Hi I'm new and was diagnosed in November 2015
by Heidi Sat Feb 06, 2016 3:32 pm
» Hi, I'm new
by Heidi Wed Jan 27, 2016 4:32 pm
» Sheila Diagnosed August 2010
by Heidi Wed Jan 27, 2016 4:17 pm
» Ongoing Forum Facelift
by Heidi Sun Jan 03, 2016 3:06 pm
» IIH in remission or not ?
by Wylee Tue Dec 01, 2015 2:27 pm
» New Mobile App is First to Allow Hydrocephalus Patients and Doctors to Manage Care Collectively
by BananasMom Tue Oct 27, 2015 10:13 am
» Pressure in head?
by medmisfit Mon Oct 19, 2015 5:41 pm
» Bothered/Vent post
by medmisfit Mon Oct 05, 2015 4:52 pm
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