I know my blog is a drop in an almost infinite ocean and I often wonder whether it's more of a public self indulgence than anything else and then I get an e mail from someone who's found it and more importantly found it useful because they have Kniest or their child or even new born baby has Kniest.
Then it really hits home and I remember the original reason I started writing about my own experiences - when I was growing up I knew next to nothing about Kniest, just a few fairly useless medical bits of information, and absolutely nothing about the experiences of other people living with the condition.
As far as living with a rare disability it was a very isolated sometimes scary existence. It also mean I was very disempowered and was reliant on doctors/consultants, who in hindsight knew as little as I did.
Nowadays, thanks to the internet, blogging, groups, facebook and twitter people with very rare conditions like Kniest are able to touch base with each other and it's amazingly empowering to find out real answers and experiences from the horses mouth.
I hope that means younger people [now that makes me sound very old...], and their parents, will have a much easier time of living with a rare disability. As an adult it's great to know there are other people, like me, out there and I'm not the only one anymore.
No comments:
Post a Comment