Written by Aaron Dennis, January 6, 2023
“Nobody in my family knew anything about bleeding disorders, when I was born,” says Christina, aged 51, from Stockport. “It was only when I was about 11 months old and started to walk and bang into things that my parents noticed so many bumps and bruises that our GP referred us for specialist testing. I was diagnosed with von Willebrand disorder.”
Looking back, several members of Christina’s family had heavy nosebleeds or heavy periods, but no-one in the family had received any treatment as they considered it ‘normal’ for them. But Christina is the only one in her family who has the most severe and rarest type of von Willebrand disorder, type 3, which explains why her family, who don’t have type 3, didn’t realise that the condition was present in the family when she was born.
“I ended up missing so much school, especially once my periods started at 11. My first period lasted 17 days, and the second one lasted 28 days; I spent two weeks in hospital.”
Christina had her first really significant bleed aged 4 and a half, which was life-threatening in its severity.
“From that point on, I had bleeds two or three times a week. This led to long-distance trips to hospital at 2am as my parents, who had me later in life, didn’t really engage with VWD and didn’t learn to give me injections. I would usually need blood transfusions, and it could be quite traumatic. By co-incidence, a boy at my primary school had haemophilia, but he had treatments at home, which made a big difference.”
“I ended up missing so much school, especially once my periods started at 11. My first period lasted 17 days, and the second one lasted 28 days; I spent two weeks in hospital. I was treated with Cryoprecipitate and transfusions; nothing would stop it! I then took the contraceptive pill and hormone treatment, but still had to store packs of sanitary towels in the secretary’s office at my school.”
Christina’s school also refused to allow her to attend when she was on crutches, which meant more time lost.
“It took two years for my periods to settle down a bit, but the real life-changing moment was when I learnt to give myself injections with factor 8 aged 14, it made such a difference. Then finally, in my early 20’s I was treated with von Willebrand factor, which was much more effective and things started to settle down a bit.”
“I have learnt to hide my VWD, as I haven’t found people particularly empathetic, especially in the workplace. I’ve never felt I was in a safe environment to be able to explain.”
Christina was also diagnosed with rheumatoid arthritis aged 26.
Managing arthritis and VWD has inevitably taken its toll on Christina, and she says every day has been a battle. Missing so much school growing up and having to be so self-sufficient early in life has had a negative impact on her ability to form relationships. She also had a Hepatitis C infection as a result of treatment with contaminated blood when she was young, and needed both ankles replaced because of the impact of VWD. Christina also needed two new knees and a hip replacement by the time that she was in her ‘30s. These operations all required extra supervision because of her condition.
Despite managing two difficult and often opposing conditions, Christina went to university aged 25, and was awarded a first in her degree. She then went on to a masters at Manchester University. She has had successful careers in hospitality and HR.
However, Christina says that she would like to see more understanding and awareness of ‘secret’ conditions at work, saying “I have learnt to hide my VWD, as I haven’t found people particularly empathetic, especially in the workplace. I’ve never felt I was in a safe environment to be able to explain.”
Christina has also found getting the right treatment on the NHS difficult, calling it a ‘postcode lottery’ of care. In fact, she has resorted to paying privately for gynaecological care, to be able to be seen and helped sooner.
“I’m not sure I’ll see a treatment breakthrough for my severity of VWD in my lifetime. But I want our voices to be heard and for people to better understand the challenges,” finishes Christina.
If Christina’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.