I wanted to share a really nice experience I had recently with one of our adolescent females, with Von willebrand disease, who has moved from children’s services to our adults.
She had seen our consultant in clinic & arranged to come & learn how to self inject DDAVP for period management, alongside starting tranexamic acid.
Asides from making me feel old because I remember her being born, her dad has Von willebrand disease and we look after multiple generations of her family, it was really great to spend some quality time with her going over her disease, access to care & teaching her how to treat.
About 10 days later she made contact and asked to come back and run through some bits. I thought perhaps I’d missed something with her self administration education but on arrival she produced a list of questions for me.
We proceeded to spend 45-60 minutes going through more details about treatment options, including an introduction to treating with Von willebrand factor concentrate if DDAVP did not prove adequate for bleeding control. We discussed how & when she can access treatment, other options for period management including the option for joint review in our gynaecology/bleeding disorders clinic, supporting her in university choices, holiday advice & general day to day advice & discussion about her condition.
Unfortunately this young lady fell victim to nearing adult transition during the COVID pandemic and therefore didn’t get the same options of regular joint appointments. Luckily with her family knowing the adult team well she felt comfortable coming in & discussing her options for access care & treatment.
At the end of the day, this is why I love the job I do, because these two conversations have been beneficial to the affected Individual & their parent in providing reassurance about their next steps in life & that we have other treatment options available. I was also able to let her know that the bleeding she was experiencing isn’t normal & we can help to resolve that as well as provide iron supplements to support blood loss until bleeding settles.