Growing up with von Willebrand Disease in a small town, Laina, 20, knew almost no one outside her own family who had a bleeding disorder. It was only when she and her mother attended the Haemophilia Society’s Talking Red conference last year, designed to get women talking about bleeding disorders, that they realised how much support was available.
“The Talking Red conference has given me choices that I didn’t know I had; choice of people to talk to, choice of medication to seek and choice to change my treatment plans. I now have a communications network with women who really get it that I’ve never had before.
“I arrived at the conference believing that the care I was receiving was brilliant, but I left realising that if we’d ventured a bit further beyond our county border there was far better, tailored treatment which we just didn’t know about. For me, the conference emphasised how important it is for people with bleeding disorders to communicate so that this sort of information is widely known.”
As a result of the conference, Laina asked her GP to transfer her to Birmingham, only an hour away, where she experienced a very different approach from her local hospital. “I wanted to make an appointment at my usual hospital. I couldn’t talk to anyone and ended up leaving seven telephone messages for the haematology nurses and I never heard anything back. We have a really poorly funded NHS in Shropshire, so I don’t want to criticise them, but when I was transferred to Birmingham I was amazed by how different it was. Someone phoned me quickly and I was able to be seen before, I went to uni. They gave me a Bleeding Disorder Information Card, which I’d never had before and offered a level of support that I’d never previously experienced.”
When she arrived in Manchester to study Modern Languages, a sporting injury meant it wasn’t long before she required medical help in her new home city. A rapidly swelling finger put her writing hand out of action just days before an exam. In desperation, she called Manchester’s Haemophilia Centre and, to her amazement, was seen within half an hour.
“The care I received was fantastic. I was seen three times that week and they wrote a letter so that I could use a laptop for my exam. They also realised that the medication I’d been taking wasn’t that effective. I had taken it all my life and it had never been changed. I was seen by multiple nurses and doctors, all of whom knew what von Willebrand Disease is without me having to explain it. They were incredible.”
Laina, who hopes to teach Personal, Health and Social Education when she finishes her degree, also found that the Talking Red conference opened up topics which she’d never discussed with anyone, such as how bleeding disorders impacted on new relationships.
“When you start getting into relationships or if you get together with someone at a party, you don’t want to sit down for half an hour to discuss your bleeding disorder before you head to the bedroom. But, that said, it is easy to cause bruising during sex which could be alarming if you weren’t prepared and there could be extra bleeding. I realised at the conference that this was something I’d never been able to talk about before as I didn’t have any contact with other women with bleeding disorders. It was great to be able to talk about this with other women just got it. I didn’t feel like I was the only one.”
Laina is now part of the Haemophilia Society’s Talking Red Focus Group and is an Advocate for the Manchester Haemophilia Centre.
She said: “Before the conference, ignorance was bliss. I thought what I was getting was good. It wasn’t bad, but it wasn’t fulfilling my need. It’s really important that everyone has access to the best healthcare services. I feel very grateful to the Haemophilia Society for the opportunity to take part in the conference and to find out so much.”