Real Life Stories

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More and more people all over the world are writing blogs about their day to day experience of living with a bleeding disorder.  We thought it would be useful to collect some of them together here.

If you know a good blog we’ve missed or if you are one of our members and would like some help to start blogging yourself then please get in touch.  In particular we’d like to find more sites from Scotland.

Everybody has a different experience of living with a bleeding disorder and many of those who blog have found approches that work for them.  Obviously, Haemophilia Scotland cannot be responsible for the content of external sites.  Before taking up any suggestions about managing your bleeding disorder that you find on websites, including ours, we would advice you discuss it with your Haemophilia Centre.

Women with a bleeding disorder

Funny Blood
Ros Cooper has type III von Willebrands disorder. She lives in Worcestershire in the UK and treats at home.  She also contracted Hepatitis C through contaminated blood products and campaigns for justice and support.

My Missing Factor
Jenna Lovell writes to inspire her readers to be healthy by sharing her story of living with von Willebrands.

Hemophilia is for Girls
A blog all about raising awareness for Women with Bleeding disorders. Ryanne has severe Factor V Deficiency and lives in Calgary, Alberta, Canada.

Men with a bleeding disorder

Missing Factor
A newly retired, frustrated writer, blogging his record the world of the 50s through the 70s from the point of view of a boy with Haemophilia.

When Blood is Thinner than Water
Learning to love life with Haemophilia B (UK).

Parents

You Got Us
Beccason5: Living with a husband, three boys, a grandma and a dog in Uptown Chicago. Writing about autism, hemophilia, chaos and unwashed socks. Laughter keeps the crazy away.

Tommy Cameron
This is a mother’s story. This is a father’s story. This is our family’s story. And mostly, this is Tommy’s story.  Tommy has severe Haemophilia A.  His mother has published two books, details of which can be found on their website.

ProphyHolic
The random thoughts of a Mother dedicated to taking care of her sons with haemophilia, staying involved in the haemophilia community and continuing to learn about haemophilia.

For the love of Star
The story of a mother and daughter in the Philippines who were diagnosed with von Willebrand Disease (Type 2M) in 2007.

A Touch of Scarlett
Telling a story and spreading awareness of a rare bleeding disorder of Platelet Storage Pool Disorder

Collections

My Girls Blood
Cheryl and her team collect stories, posts and blogs from all over the world.

Infusr
Infuzr is a blog with content provided by multiple contributors for the purpose of educating, supporting and advocating for members of the haemophilia community.

Living Stories
1246 people with bleeding disorders in the UK were diagnosed with HIV following treatment with contaminated blood products. Of these, approximately 900 people have died. There are extraordinary stories to tell from the individuals and families affected. On this audio website, you can hear their stories, gain an insight into their experiences and learn the facts behind their history.

4 comments

  • Wow, such as good initiative xx

  • Thank you for sharing our story and raising awareness of PSPD

  • Hello,

    My name is Jennifer Cameron and I am the proud mother of a 6 year old boy born with Severe Hemophilia A. With the help of my son, I have written two books directed towards other children who have Hemophilia.
    My son is an amazingly brave person and it is a dream come true for our family to have these books circulating in hopes of helping other families and children whose day to day routines are similar to ours.
    I have included the link to the website where book purchases can be made. Thank you for your time.

    http://www.tommycameron.net

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