Timothy Porter
Tim Porter's Potters Arf Marathon page
Fundraising for IIH UK
Story
My beautiful niece, Tiffany, had her life turned upside down in October 2013. After 4 years of hard training she achieved her ultimate goal as she graduated from university as a Specialised Surgery Nurse. Just a month later, her whole life changed. She’d been having terrible headaches, aching eyes and body pains, but simply put this down to the stress of her new role. However, after visiting an optician, she was rushed to hospital with a swollen brain, a bleed, and lesions with raised Cerebrospinal Fluid (CSF) pressure. She also lost 95% of her vision, literally overnight. She was taken into theatre for emergency brain surgery to try to drain off the excess CSF and fit a shunt to drain it away continuously from her skull into her abdomen. Since that first surgery in 2013, she’s had countess further invasive surgeries to replace shunts and deal with ther side effects, receiving thousands of stitches in her skull and abdomen in the process. She was eventually diagnosed with Idiopathic Intracranial Hypertension (IIH).
IIH is a neurological condition of unknown cause defined by increased intracranial pressure around the brain, despite there being no tumour or other known disease present. When the pressure around the brain rises, the space containing the fluid cannot expand. It is this excessively high CSF pressure that produces the symptoms of IIH.
Symptoms of IIH:
- severe headache (worse and longer-lasting - sometimes weeks at a time - than migraine!)
- optic nerve damage, decreased depth perception and peripheral vision, double vision, and significant loss of vision
- pulsatile tinnitus ("whooshing noise" in the ears in time with the pulse)
- nausea and vomiting
- fatigue
- photophobia (dislike of and pain caused by bright light)
- problems with balance and spatial awareness
- aphasia (difficulty using or understanding words)
- short- and long-term memory loss
- confusion
- feeling 'spaced out’
- depression, mood swings and more
Although many sufferers have symptoms in common, each sufferer is an individual and should be treated accordingly. Tiffany has pretty much all of these symptoms, is in constant pain and remains 95% blind. Sometimes the pain is almost more than she can bear, yet Tiffany is always so upbeat and positive about life and is an inspiration to all who know and love her.
Tiffany’s words sum up better than I ever could how IIH profoundly affects her life: "Some ‘Friends’ disappear from my life. Normal life disappears and pain brings me to tears most days, yet I still smile. The memories of myself and family disappear every minute, yet I don’t give up. My body breaks down and my chances of having a family of my own, working or regaining my sight disappear every second, yet I still fight for a cure. But you know what hurts me the most? That I will never see my pops give his last smile, or Dave give me that look that every girl wants when he says I do. And that myself, a person who has always asked ‘ What’s normal anyway?' and defended the disabled or slightly 'different' has now become the person who is 'not normal.'"
Please support me and help Tiffany and thousands more like her with this awful life-changing and life-limiting condition, by donating something to IIH UK today.
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If you want to know more about IIH UK, please visit: http://www.iih.org.uk
The Charity’s aims are:
• To promote and protect the physical and mental health of sufferers of IIH through the provision of support, education and practical advice.
• To advance the education of the public in general on the subject of IIH and to promote research for the public benefit in all aspects of IIH and to publish the results.
IIH UK strives to achieve these aims by:
• Providing information and links to sources of information for sufferers of IIH
• Supporting sufferers of IIH in contacting others with the condition
• Working with other organisations who represent people with conditions with symptoms of, or symptoms similar to those of IIH
• Increasing awareness of IIH both within the general public and the medical profession
• Campaigning for funding to facilitate research into IIH, its treatments and possible cures.