At least four generations of women in Nicola’s family have had haemophilia C, or factor XI deficiency.
But it was only when searching for help for her daughter a few years ago that Nicola finally found the support she and her family needed through The Haemophilia Society’s Talking Red campaign.
Talking Red brings together women with bleeding disorders to dispel myths, share knowledge and empower them to get the best care available. The next free Talking Red one-day conference takes place on 14 March in York.
For the third year running Nicola, 46, her mum Sheila, 74, and daughters Tegan, 12, and Olivia, five, will be coming to the Talking Red conference. The family turns the event into a girls’ weekend to celebrate their “special” blood.
Nicola said: “The first time we attended Talking Red my mum found it quite emotional because for all these years we hadn’t known any other females with a bleeding disorder. To go there and listen to the speakers and other females who had been through what we’d been through was such a relief.”
Although Nicola’s grandmother had bled heavily and bruised easily, her daughter Sheila, Nicola’s mum, was not diagnosed with haemophilia C until she was in her late 30s following a haemorrhage when she had a tooth out. Nicola, then aged 11, was diagnosed at the same time.
At school Nicola had to deal with the stigma of having a bleeding disorder at the time of the contaminated blood scandal and is determined that Tegan will not go through what she’d experienced. Her younger daughter Olivia, five, does not yet know if she has inherited haemophilia C.
Nicola said: “Mum and I faced constant barriers, constant fights with doctors and consultants, with people not recognising that women could have haemophilia. We felt very alone.
“I wanted things to be different for Tegan and have always explained to her that we’ve got special blood and although there are some things we can’t do, we will try to do as much as we can. As she’s got older I’ve looked for more support, which is when I discovered Talking Red.”
Now that Tegan is at secondary school, Nicola has played a big part in raising awareness about their bleeding disorder with staff. She has drawn up Tegan’s care plan and has given a presentation to staff about haemophilia C and how to manage the condition.
Nicola thinks that attending Talking Red has helped Tegan deal with her bleeding disorder by listening to young women closer to her own age and understanding that others are going through what she is experiencing.
Nicola said: “I wanted to get involved in Talking Red to get support so Tegan didn’t feel like she’s on her own and no one understands her. It’s different hearing from girls her own age. It means she can feel there are others like her rather than rebelling against it and feeling ‘poor me’. “
Meeting other mothers who are often managing their own condition as well as their daughter’s has also helped Nicola.
She said: “I’ve been stressed about things, anxious about Tegan at secondary school. I feel she’s so vulnerable if she gets injured, and yet so much is out of my control. It’s about getting support from others and getting through that. By meeting other mums we can support each other.”
As they look forward to attending this year’s Talking Red, Nicola said: “For me it’s about turning something that can be seen as negative into a positive. I want my daughters to enjoy all the opportunities every other girl their age takes for granted. “
Book your place on The Haemophilia Society’s free one day Talking Red conference in York on Saturday, 14 March today.