livingwithdisability: Rare Disease DayMy son has Dravet…


Rare Disease Day

My son has Dravet Syndrome. This is Joe (image description) in the Tardis at the Dr Who Experience, Cardiff.

“Dravet Syndrome is a rare neurological condition causing severe, difficult to control seizures, alongside varying degrees of learning disability and other issues, such as autism, mobility problems, speech difficulties and feeding problems.”

Dravet Syndrome is thankfully very rare, affecting around 1:29,000 to 1:40,000 births in the UK. This means it is often unheard of and the same goes for many other rare conditions. 

But if we put all the rare diseases together, somewhere in the region of 30 million people across Europe are affected by a rare disease.

Rare Disease Day has been held annually since 2008 across the world, on 29th February, itself a rare date, or on 28th February in non-leap years. It is a day to raise awareness among the public and the professional community through a range of events and activities.

To raise awareness, you don’t need to do much – just like or reblog this page. 

If you have a Rare Disease post you want me to reblog, message me with a link. I have 6000+ followers :-)

Find out more about Rare Disease Day here:

Find out more about Dravet Syndrome here

Joe also has a trabasack

via Tumblr

Comments are closed.