About me

I’m Matt, a mid 50s man here in the UK.

I believe that I have suffered from a hypersomnolence disorder for many years, but thought it was a result of my lifestyle.

I had no real help in finding out what was wrong with me, apart from a very understanding GP. Much time was spent trying to piece together the problems and with him directing me to different specialists. Often though I’d be the one doing the researching. However without his support, I’d have never got to the end of my journey.

My GP retired not long after my diagnosis and I hope I wasn’t part of the cause!!!

I’ve found help with the excellent Hypersomnolence Australia. They were the first-ever not for profit charity in the world dedicated to Idiopathic Hypersomnia. I am working with HA and Michelle as the UK project coordinator for the International Idiopathic Hypersomnia Awareness Week.

The provision of treatment and support in the UK for this illness is sorely lacking.  There aren’t enough qualified doctors and treatment options lag behind other offerings in the world.  In addition I have found social support and recognition to be limiting.  All need to change.

It is hard to be an activist when sleep is a dominant factor in ones life, but it helps in addressing the illness.  I have found that there are people willing to listen and to consider change, but it is a hard long slog.

If anyone has any ideas about what we can do in the UK to help raise awareness contact me here.

Learning about the vagarities of IH and how it has impacted on my life have become a bit of a semi-professional hobby. I’ve collected a vast amount of information and feel it is a waste if I don’t share this. I don’t want others to hit the same pitfalls as I did.