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What is IH and how does it affect families?

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This is to raise awareness of the rare brain condition, I.H. during IH awareness month (sept. 2016.) It explores what IH is, and then how it affects families, with photos and quotes from young carers who look after a family member with IH.

Please share this to help us raise more awareness of IH, and young carers looking after a family member with a rare condition.
Thank you so much.
Victoria Lewin,

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What is IH and how does it affect families?

  1. 1. What is I.H. and how does it affect families?
  2. 2. “Nothing Seems normal compared to other people’s lives.” Young carer USA
  3. 3. “I get sad and mad when Mommy isn’t home.” “IgetsadandmadwhenMommyisn’thome.” Young carer, USA.
  4. 4. Thank you to all the young carers, IH patients and their families who helped to make this awareness campaign a reality. I truly appreciate your support. Together we can make a difference….so thank you! Victoria Lewin
  5. 5. For more information on IH please go to For online support please go to For more information about Caitlin’s wish and our support resources, please go to