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 Our IIH information booklets launched in England

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Heidi
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PostSubject: Our IIH information booklets launched in England   Tue Apr 22, 2014 5:23 pm

Our four IIH information booklets have been launched in England this month and will go out to all the Hospital Trusts who have a Hospital that treat headaches. This should be completed by the end of May. We then intend to do the same for Wales, Scotland and Northern Ireland. We are the only IIH charity in the UK to do this and as you can imagine it is a mammoth task for such a small team and charity to do.

  • Just diagnosed - What is IIH?
  • Diagnostic Tests for IIH
  • Medical Treatment and Monitoring for IIH
  • Surgical Treatments for Severe IIH

In order to get the booklets out and to continue printing them we would like your help. We need fundraisers and volunteers. We have many big projects planned for the next 2 years, that also involve advocating and encouraging social inclusion for sufferers of IIH.

We know you all want a cure for IIH, but what about the recognition as a sufferer, as an employee, as a person who lives with a debilitating rare disease, who wants to be viewed as someone with a genuine chronic illness? As someone who needs financial help when sick pay runs out or is denied? What about living with this condition and the help that is often denied because your illness is not recognised equally to other neurological conditions?

As a charity we are here to advocate and support you in all the ways you need. We know the difficulty you face when you're penalised for having too many sick days, or pay runs out, or you don't do enough hours to warrant sick pay. We know how hard it hits when you lose your job because of time off. What about when you can't get mortgage insurance because of your condition or you can't claim benefits?

Though we support research into IIH, we leave the research side of things to instead focus on the practicalities that you need. We all want a cure for IIH, but we also need the practical and emotional help to help face the hard times that this condition can bring.

Please help us to help you!
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Our IIH information booklets launched in England

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DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
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