Gemma’s story

Gemma’s medical history should have meant her bleeding disorder was diagnosed as a child.  

Her great-grandfather had haemophilia, she’d bled profusely after dental work in her early teens, was constantly anaemic and had a tendency to bruise easily.  

But because her mother had been incorrectly reassured by a clinician at her birth that the haemophilia in her family would not affect her daughter, no one ever joined dots until 10 years ago when Gemma’s son was born and started to get large, unexplained bruises.   

The diagnosis of her son with severe haemophilia A was swiftly followed by her own – doctors told her she was not only a carrier of the haemophilia gene but also has mild haemophilia.  

When my mum was told that haemophilia wouldn’t affect me or my sister it was never mentioned again, and I had no idea of my family’s medical history.

Gemma

Gemma said: “It does feel surprising that my condition was not picked up earlier, but I think in part it was because some of my symptoms were normal in my family, so maybe alarm bells didn’t ring.”  

Apart from having to deal with extremely heavy periods, Gemma feels grateful that her bleeding disorder does not impact too greatly on her everyday life. Like many mums of boys with severe haemophilia, much of her energy is devoted to ensuring his condition is well managed and that he has as active and normal a life as possible.  

She said: “Although my factor levels are 38%, that is nothing compared to my son’s condition. Having said that, for two to three days a week, he actually has higher factor levels than mine.”  

Gemma is glad that she was unaware of the haemophilia gene when she was considering having children, as she thinks this might have made the decision more difficult.  

She said: “I feel very lucky that both my children were born without any complications. If there had been any problem with their health as a result of ignorance about my own condition, I know I would feel very differently about the whole situation.”  

Gemma is passionate about supporting other women who have similar symptoms and can suffer for years before getting a diagnosis. She is actively involved in our Talking Red campaign to highlight women’s bleeding disorders.  

She said: “Women need to be empowered and educated so that they can ask for the tests and treatment they need. There’s still a lot to do in raising awareness of women’s bleeding disorders.”  

The Haemophilia Society (THS) has developed a symptom checker aimed at women and girls with heavy periods who may have an undiagnosed bleeding disorder. Encourage your female friends to try the symptom checker today.