“Real people. Real stories. Real Hope.”
“I was angry in life” she remembers. “I felt lost. IIH is ‘idiopathic’ – there aren’t any answers, no reason for it. Nobody understands what you’re going through. There was no-one who could really relate to the situation I was in. I was angry with the world.”
Read MoreTÜnde was diagnosed with Idiopathic intracranial hypertension (IIH) around a year before starting the Hope Programme. She had just been trying to deal with all her symptoms and appointments. TÜnde heard about the course from support group IIH UK “I wanted to find out what I can do to cope better” she says. “How should I do things differently?”
Read MoreNaomi was newly diagnosed with IIH and was still getting used to her medication, when she heard about the Hope Programme from IIH-UK via their Facebook group. Having never heard of IIH before her diagnosis, Naomi says that living with the condition “was quite an eye-opener – it was a whole new world out there for me”. She was actively looking for more information, support and to learn from other people with IIH.
Read MoreBecky has a child with IIH (Idiopathic intracranial hypertension). Before she went on the online Hope course for Parents of children with IIH, Becky says she was “struggling with hospitals, medications, constantly - hour-by-hour, day-by-day. It’s hard to plan things. It was getting me down.” She found out about the course on the IIH UK National Charity’s Facebook page* and put her name down.
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