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Living with IIH and why YOU should care?

Everyday people affected by Idiopathic Intracranial Hypertension, suffer with debilitating symptoms and chronic headaches. It can affect ANYONE of ANY age, gender, body type, and ANY ethnic group. It primarily starts with an unbearable headache that never goes away, neck stiffness, balance and memory problems as well as other worrying symptoms.

IIH is often misdiagnosed as Migraine, Brain Tumour, Depression, ME/CFS and many other conditions. On average it can take up to 3 years for it to be diagnosed, and is usually found after visual problems occur. Visual problems can lead to either partial or full vision loss, when surgery is then necessary to halt the process. 

IIH affects 1-2 people in every 100,000

You can develop IIH at any time in your life, and you won’t know you have it until you are diagnosed following several tests, the main one being a Lumbar Puncture. Unlike some conditions you can’t be screened for IIH, so until you start exhibiting its symptoms, you wouldn't know you have it. It affects 1-2 people in every 100,000, which makes it a rare disease.

At this point no one knows why an individual has IIH, although it is known that genes do factor in a lot of conditions and diseases, it has neither been ruled in nor out, as a factor in IIH. One of the characteristics better known about this condition is that it affects overweight women of childbearing age. Although rare, men and children can also have this condition.

You don't look sick with IIH

There is no cure for IIH but there are treatments that can help send the condition into remission. Remission can be permanent or temporary depending on the individual and their medical history. As with any medical condition research is ongoing.

To the naked eye a sufferer looks well, but are actually too sick to do everyday tasks. The headache is often so severe that they experience depression and anxiety. In ALL cases they feel isolated and misunderstood.

IIH is a life changing disease that can affect a whole family

The impact this condition has is not only a physical one, but an emotional and financial one too, and can affect a whole family. With your help we can make a difference to the lives of people who have IIH, or their child who has this condition, by providing them with everything we possibly can to make their lives more bearable.

It was previously known; as Benign Intracranial Hypertension and Pseudotumor Cerebri, although some clinicians still use these names. 


Tell me and I forget. Teach me and I remember.

Involve me and I learn. Benjamin Franklin

Join our campaigns

IIH is Invisible but I'm NOT Campaign

Social Inclusion campaign to raise awareness and recognition for people living with IIH. To be launched 1 September 2016.

IIH Support Aid 

Campaign to raise funds to be able to provide holidays, financial aid, help with education and travel costs. Launched August 30 2016.

IIH Can Happen to Anyone Campaign

We NEED your photographs to make these possible. We want to show the diversity of the people who are affected by IIH, whatever your age, gender, body type and ethnicity. 

We also need before and after surgery pictures, to enable us to also raise awareness for why our grant giving/financial support aid is needed. 

If you feel as strongly as we do about these issues, please send your photo's headed either I'm not invisible, IIH Support Aid or IIH Anyone Campaign to;

Rare Disease Day

Rare Disease Day takes place on the last day of February each year, to raise awareness for people living with a rare disease. The campaign targets not only the general public, but to also raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, and since then there have been thousands of events, throughout the world.

Rare Disease Day - 28 February 2017

#rarediseaseday or #rarediseaseday2017

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Brain Awareness Week

Brain Awareness takes place in March every year for a period of one week. Ourselves and organisations worldwide take part in events to not only raise brain awareness but to educate all the aspects of brain function.

Activities organised are usually imaginative and may also include open days at neuroscience labs; exhibitions about the brain; lectures on brain-related topics; social media campaigns; displays at libraries and community centers; classroom workshops; and more. It is a perfect time for us to educate the public further on Idiopathic Intracranial Hypertension, and the way it affects our brain. You can find more information on the Brain Awareness Week website

Brain Awareness Week - March 14-20, 2017

#BAW #BAW2017

IIH Awareness Month

September every year is dedicated to raising awareness for Idiopathic Intracranial Hypertension (IIH). For the whole month ourselves and people living with IIH raise awareness for the whole of September, to educate  the public on how it is triggered, the symptoms, how it is diagnosed and about the treatments. We also raise awareness on how it debilitates the sufferer, and the affect is has on their lives as a whole.

September 2016 


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