Living with von Willebrand disorder, part 6

Written by Aaron Dennis, December 13, 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.   

The New Normal

7 months on from surgery and we have adapted to our new normal. Surgery went well, her team was great, we had alot of support from the community nursing team and since things settled after the post op period, she hasn’t had any breakthrough bleeds severe enough to require additional treatment. Ella now has an infusion of clotting factor every other day which is administered by myself or Nick (we alternate each time) in the comfort of our own home. This involves accessing the port with a gripper needle, then administering 4 syringes (3 flushes and 1 clotting factor) and then de-accessing the port (taking the gripper needle out) all under sterile conditions. To be able to do this and reduce the chances of those big traumatic bleeds has been life changing. Ella has started school this year, she also goes to ‘big girl ballet’ with her older sister Leah and more recently has started swimming lessons. The school was great getting the care plan in place, the teachers are brilliant with their communication in relation to Ella and so far that side of things has been drama free. 

We are at a tricky point with needle anxiety. Something changed at the end of August and Ella started to react more to the port being accessed – she now seems to have anxiety each time we need to access the port. Once it is in she is usually happy again, but getting to that stage at the moment is becoming challenging. We are currently working our way through various distractions – hugs with her big sister Leah, video calls with family, fidget toys, TV … the list goes on and what works one day may not work the next. For the past week an orange pot of play-doh has done the trick but I’m sure that novelty is soon to wear off. At the end of the day she is 4 years old and in those 4 years has been poked and prodded with needles more times than anybody would like, so if she wants to fight against it and be cross with the world then who can blame her? 

This is life with a bleeding disorder – it’s constant and there will always be new challenges to face, but our little warrior will always overcome them eventually. For the sake of never having to experience the scenes we had earlier this year, that negotiation with a stubborn 4 year old every other day is definitely worth it. 

With further research being done into bleeding disorders each year, we don’t know what medical advancements may come in her lifetime but we do know we are in a better position than we would have been if she was born 30 years ago and can only keep looking forward. 1 day at a time, 1 challenge at a time and work as a family to get over whatever the next hurdle is.

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.