Being rare

What’s it like to grow up with a very rare bleeding disorder? Some of our community members talk about their experiences and what they have learned along the way.

What were some of the challenges for you growing up?

Hi, my name is Adam and I have type 3 VWD (a severe form).

When I started school, I was worried I would miss out on things because of my treatment. I have very vivid memories of my mum driving me to Emergency with my head over a bowl and blood coming out of my nose because we couldn’t stop it. And then I would turn around and try to go to school the next morning.

Hi, my name is Bel and I have factor X (10) deficiency.

When I was younger, I lived in a remote outback town. Things have changed now but in those days factor X deficiency was sometimes described as a type of haemophilia. At times the hospital staff didn’t believe Mum, because ‘only boys have haemophilia’!

During my teenage years I felt very isolated and had no connection with anyone else like me. I hated having to have factor treatment and knowing I had to do it all the time. And every time I had a period, I needed a double dose. So I got to a point in my teens where I would push the boundaries with my treatment and then get a bleed.

Hi, my name is Tayla and I have severe haemophilia.

When I was growing up, it was challenging missing out on things/activities that were considered too ‘dangerous’ and watching my friends be able to do them.

Specifically, being a girl, I really struggled with controlling periods/menstruation and found it difficult to do normal daily things while menstruating.

What are your tips for other young people with rare bleeding disorders?

Adam

I took up rugby union refereeing as a way of fitting in with school sports, which was certainly a positive thing, something I did until I was in my mid-twenties.

I also became involved in Scouts and now I am a Scout Leader. Scouts is all about responsible risk-taking and it was an environment where I could do it quite easily. I know that the voluntary scout leaders at the time were certainly worried about my bleeding but I was able to participate in those activities to the fullest extent. That’s why I think the Haemophilia Foundation camps for kids with bleeding disorders are really good.

Bel

Reach out for support
Be part of your local foundation, attend functions and camps
Work at becoming independent – and you may need to figure out how to do some things yourself
Don’t let your bleeding disorder stop you (within reason!)

My mum was infusing my treatment at home, which was great, but it didn’t give me any independence as she was the only one that could do it. I never thought I could leave Mum, but I was determined to learn to infuse myself and become independent. By the time I was 18 I could infuse myself. I was able to leave home and move to the big city and travel the world, something I had wanted to do for so long and did do successfully.

Tayla

It sucks missing out on things. But seriously, take your medication and be careful. It gets better! Research is happening every day. I went from 2-3 needles a week to only 1! You’ve got this!

READ MORE

To read more personal stories from young people with bleeding disorders, visit the FACTORED IN youth section on the HFA website.

Image of canoeing at camp provided by HFV and reproduced with permission.