IIH UK

Following an eye test in April 2018, our lives changed. Our daughter, Ariana had been complaining of headaches and was very unwell.

 

At 6 years old, she was referred to Addenbrookes Ophthalmology and Neurology and was diagnosed with Idiopathic intracranial hypertension (IIH), also known as benign intracranial hypertension or pseudotumour cerebri; a rare, invisible condition with an unknown cause. The condition is associated with raised fluid pressure around the brain. The fluid that cushions the brain is called cerebrospinal fluid (CSF). It can cause disabling daily headaches and visual loss, which can be permanent. The raised brain pressure can press the nerves supplying the eye (also known as papilloedema).

 

For the past four years we have been back and forth to Addenbrookes for lumbar punctures and regular scans to keep a track on the pressure in her brain. She has been on acetazolamide, which caused her to have hydronephrosis in both of her kidneys and is now on another medication. We have been told that if this treatment is not successful, she may need surgery.

 

Ariana is a brave warrior, persevering and enduring all her treatment so far.

 

We are desperate to raise money to help fund research in the hope of finding a cure.

 

Every donation will help.

 

Thank you in advance for your contribution to this cause that means so much to us.

 

 

More information about IIH UK: IIH UK is dedicated to providing sources of information and support to people with Idiopathic Intracranial Hypertension (IIH), and all who support them. We strive to promote awareness and campaign for funding to facilitate research into IIH and advocate the Charity's public, social and support activities. Registered Charity in England and Wales 1143522 and Scotland SCO43294