Growing up with VWD

Hi, my name is Cassie and I have type 3 von Willebrand’s. I am on twice a week prophylaxis and have more when required for bleeds.

What was it like growing up with VWD?

When I was in primary school, I missed a lot of school for hospital trips. For a long time, I had to go to hospital twice a week to do my medication there. Since we lived an hour and a half away from the hospital, this was quite intense for my parents.

I also missed out on some school sports because the teachers were scared of what could happen. It didn’t affect my friendships, but I got very frustrated missing out on sport.

How did you learn to do your own treatment?

After year 6, I went away to boarding school. This meant I had to be able to do my own needles. I would have been about 11 or 12 years old.

I had a massive needle phobia. Every time the doctors would try to give me a needle, I would move my arm away. We would be there for up to an hour sometimes waiting for me to keep my arm still. So learning to give myself a needle was a very big thing for me.

The social worker at the hospital was a massive help – and all the nurses and doctors there were really helpful. They had lots of great tips for me about self medicating, and were just super encouraging.

How have you managed your periods?

I have quite heavy periods that last around two weeks, which was a lot for me, especially at boarding school. I often woke up with lots of blood on my bed.

I went on the pill to stop my bleeding when I was about 16. That’s been a journey! Some pills can really mess with my emotions, and some didn’t quite stop my periods, resulting in months of nonstop breakthrough bleeding. So that has been a lot of trial and error.

I always knew my periods weren’t normal, but I didn’t realise how bad they were until pretty recently when I stopped taking the pill.

I had to start leaving work because of heavy bleeding, and then I realised that was not something everyone had to do. I’m a barista in a tourist destination. It’s not the kind of job that you can just leave work early – sometimes it’s too busy to even have a break. You really have to be able to just work. I did my best to manage this by having extra Biostate® (factor VIII/VWF concentrate) during my period, sometimes daily.

More recently, I have been using the Mirena® IUD to control my periods. I also have always used tranexamic acid during the heavier days of my period or for other bleeds.

Do your periods cause other problems?

I have struggled with anaemia and iron deficiency a lot in the past, which meant I was very tired. This mostly impacted me when I wasn’t on the pill/Mirena® . I often missed social stuff or felt I wasn’t able to complete university/school assignments to the best of my ability because I was just too tired. I’ve had lots of iron infusions, which have been so helpful. I eat a lot of red meat and I also have iron tablets – they help a bit.

What would you say to other teenage girls with bleeding disorders?

If there’s something wrong and you go to a doctor and they say it’s fine, go to another doctor. Don’t let them dismiss you. Sometimes you really just need to advocate for yourself.

I tried a pill that didn’t quite work and I ended up having a 3-month period. When I went to the GP about it, she told me it was just normal for my bleeding disorder – to just keep having my medication and it would stop soon. It did not stop soon! I ended up going to a different GP and she put me on a different pill, which stopped it almost immediately.

FIND OUT MORE

For more information about teenage girls and bleeding disorders, visit the GIRLS section on Factored In.

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