All tagged Rare Disease Day

What To Accept After Years Of Intracranial Hypertension Treatment

Reflecting on my IIH or Intracranial Hypertension treatment, as it comes to an end, has been emotional. IIH is a rare and disabling brain disease and I’ve hoped for a life without constant pain Since 2014. My first procedure showed that I’d benefit from brain stent surgery, and I did. My ability to communicate which would have crushed my family if it hadn't improved and it did with each surgery. As I complete my treatment, the harsh facts are that I suffer daily but there are positives, mostly my ability to be a good mum and wife.