Living with von Willebrand disorder, part 3

Written by Aaron Dennis, November 23, 2022

Carly, 32, lives with her husband Nick in Devon. They have a busy house; with daughters Leah (6) and Ella (4), who has type 3 von Willebrand disorder (VWD), as well as an excitable boxer dog.  

Since Ella was diagnosed, Carly has found it helpful to write down her experiences about coming to terms with her daughter’s bleeding disorder, and how they grow to manage it as a family. Carly has now decided to share some of her journaling with us, in the hope that sharing her experiences is helpful for other families.   

Early Optimism Meets Reality – October 2021

We’ve talked about Ella being in ‘a good phase’. She really has been – yes, she’s still covered in bruises and she bleeds well when she gets a cut, but when she’s had nosebleeds this year they have stopped after a while with just the use of tranexamic acid. This has been a real breakthrough; after a couple of years of fairly frequent infusions, she last had a bleed on Christmas Day, 10 months ago. 

This is despite having spent most of Ella’s life so far bracing myself most days for ‘today could be the day something goes terribly wrong’. It’s so unpredictable, we don’t know if or when the spontaneous internal limb bleeds will start, but we know when they do life changes, so this nice long period without a bleed has been reassuring.  

Perhaps a little too reassuring. When we were told of her diagnosis 3.5 years ago, we were told it would affect day-to-day life and she would likely one day end up on prophylaxis; and no, this tiny little baby will not grow out of this condition. But… she’s our little Ella, she’s a stubborn little whirlwind and if anyone can prove the medical textbooks wrong it will be her.  

Yes, she was diagnosed with Type 3 VWD and no there is no cure… yet. I’ve managed to convince myself that they could be wrong. Every new condition needs a first case, right? She could be the currently unrecorded ‘type Ella’. There could be a type which presents as type 3 in the baby years but maybe… just maybe she can outgrow it. Luckily, I am married to a wonderful man who is far more balanced than me. My mind switches rapidly between bracing for the worst and believing a new (unrealistic) best case approach. Nick takes every day as it comes; he is realistic that we are currently in the calm before the storm and he is happily taking that while we can. I feel my mind would be less exhausted if I could share that approach. 

23rd November 2021 update: Ella was 2 days short of 11 months’ infusion free, when a stubborn nosebleed lasted nearly 9 hours and required an infusion. For the first couple of hours we thought it would be OK, it started slow and we’d dealt with many of those this year, eventually the tranexamic acid. Sadly, this time the bleeding increased as the day went on. Ella was so fed up and we had to face reality that it was infusion time again. Once again the treatment and care received from our local hospital was brilliant. As a 3-year-old she was far more aware of what was going on than she was as a 2-year-old – I was shocked and relieved when (as rarely happens) the doctor managed to access her veins first time.  

So, it turns out, she might be type 3 after all, and my little theory of ‘type Ella’ maybe wasn’t as accurate as I liked to believe at the time. I’m glad we were with her when it started, rather than her being at pre-school, although actually that side of things has gone smoother than expected – she doesn’t like being away from us but in terms of the bleeding things have been fine there.  

A big part of me felt deflated on behalf of my little lady when the reality kicked in again, but we must keep holding onto positives – she went nearly 11 months relatively drama free. That’s way more than we ever expected and we realise how lucky we are to have had that time. Also, I can now hold on to hope that just because she’s had a bleed, doesn’t mean the next one is just around the corner, maybe the next 11 months could be good too.

If Carly’s story sounds familiar, why not join our VWD Live event, in Southampton on Saturday, 28 January 2023 and meet others who share similar experiences?

For the first time, a whole day where time is dedicated to von Willebrand disorder (also known as von Willebrand disease or VWD). Specialist speakers will be on hand to talk through the latest news and views.

Tickets are free to members.