IIH Brains Trust Revenue

About IIH Brains Trust

Supporting those in Australia and New Zealand with Idiopathic Intracranial Hypertension (IIH) and their primary Carers. Raising Awareness of IIH. The intention of the IIH Brains Trust is to increase the knowledge of Idiopathic Intracranial Hypertension (IIH), also known as Pseudotumor Cerebri or Benign Intracranial Hypertension, and create a greater appreciation of what those living with the condition have to deal with on a daily basis. Our philosophy within IIH Brains Trust is ‘Empowerment through Knowledge and Support’. Through KNOWLEDGE of our condition, its comorbidities, the possible treatment options, and the available research, and the SUPPORT of each other during life's highs and lows we believe that each of us can be EMPOWERED to be stronger individuals while living with IIH. Idiopathic Intracranial Hypertension (IIH), also known as Pseudotumor Cerebri and Benign Intracranial Hypertension is a chronic condition that affects 1-2 people in every 100,000, and while it can strike a person of any age, gender or race, it is most often appears in women while they are of childbearing age. Currently there is no known cause or cure for IIH, and with it being so rare, very little research being done into either area. IIH is characterised by an excess of Cerebrospinal Fluid (CSF) in the limited space of the cranial vault resulting in increased Intracranial Pressure (ICP), headaches, papilledema (swelling of the optic nerves) and tinnitus (ringing or whooshing sounds in the ears). While the disease itself is not fatal, it can be significantly life changing and debilitating for those that have to live with it. Sufferers can experience continuous debilitating headaches, visual disturbances, with some experiencing permanent visual loss, extreme fatigue, issues with memory and cognitive function, problems with balance, pain in their back and limbs, as well as experiencing terrible side effects from the medications.

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