Thursday 17 April 2014

World Haemophilia Day 2014

Hello there and happy World Haemophilia Day!


Whether you're a bleeder or a clotter you may be interested to see this video which I made last week of me having one of my regular clotting factor injections.  As a severe bleeder with type 3 von Willebrand I learned to self-infuse factor 8 aged 14 (26 years ago now) and it revolutionised my life.  I am lucky to find injecting relatively straightforward, most of the time.

I was intending to re-record this today, wearing red, for World Haemophilia Day but instead I'm taking my dad out for a birthday lunch as he was 75 yesterday, so you're gonna see my trial run which I figure is good enough.  Please bear with my efforts as it's the first video of myself I've ever attempted!

I wanted to record and post this to raise awareness of the thousands of women who live with bleeding disorders and also to reach the millions of undiagnosed to encourage anyone who thinks they might have a clotting problem to consult their doctor with a view to getting tested.  

Not everyone has to inject like I am doing, those who are severely affected do and you don't have to do it yourself.  I chose to so I can take my treatment and travel / work anywhere.  I am lucky enough to be able to do this and I appreciate that massively.  Others in less affluent parts of the world do not have access to the most basic treatment.  To find out more about that and how you can help please follow this link:

Save One Life

I hope you enjoy (?) my video or at least find it interesting, and if you're a fellow bleeder or carer feel free to feedback on my technique or sanitary arrangements!  

Funny Blood Jab

I've tried to upload the video but blogger won't let me so I now have my first ever video on YouTube.  Apologies the sound is a bit rubbish - I'm a novice!  Thanks for watching ;)

xx

2 comments:

Platelet Charity said...

Hi Ros,

It would be good to make contact as I am running a charity raising awareness & funds for medical research into platelet functional disorders.

Ros said...

Apologies for not replying to this at the time Platelet Charity but I'd be happy to be in touch - if you want to post a comment with your contact details, I won't publish it but will get in touch x