Struggles & Support | A mother's haemophilia story | The Cinderella Study
Haemnet’s Cinderella Study is investigating the unmet needs of women and girls affected by bleeding disorders. The women participating in the study include mothers who carry the haemophilia gene and have children with haemophilia.
Most people with haemophilia are born with the condition and it is usually inherited (passed down from parent to child). All daughters of men who have haemophilia will carry the haemophilia gene. If a woman has the haemophilia gene, there is a 50/50 chance that her sons will have haemophilia and a 50/50 chance that her daughters will carry the gene.
This inheritance pattern means that family history is important. There is a longstanding but mistaken belief that haemophilia doesn’t affect girls, and this may play into the idea that having daughters means haemophilia is ‘out of the family’. But girls and women are affected by haemophilia. Alongside the fact that they can pass on the gene to their children, many experience bleeding symptoms, such as bruising, nosebleeds, heavy periods. Not being aware that there is haemophilia in the family may lead to the normalisation of these symptoms and accepting them as ‘just part of being a woman’. Bleeding symptoms may also be normalised in this way if multiple women within the same family experience them. If a family history of haemophilia isn’t shared from generation to generation, diagnosis may be missed or come as a complete surprise. It may also mean that a woman who doesn’t know she is affected by haemophilia gives birth without the recommended precautions being in place, which is a risk to both her and her child.
The story of a mother being diagnosed as carrying the haemophilia gene following the diagnosis of a child is not unusual in haemophilia. Even when they experience symptoms, many women who have the haemophilia gene reach adulthood without a diagnosis because they don’t know there is haemophilia in their family. When a child is diagnosed with haemophilia either shortly after birth or during their early years, the main focus is inevitably on their medical and physical needs. But when the mother of that child receives a diagnosis at the same time, her need to come to terms with both her child’s and her own diagnosis can sometimes be overlooked.
Emotional and psychological support are essential when a bleeding disorder is diagnosed and should be available as a routine part of bleeding disorders care. The Cinderella Study found that the mothers of children with haemophilia experience fear and anxiety around their child’s diagnosis, sadness and guilt around having a passed a condition onto their child, and pressure and emotional stress about treatment options and the challenges associated with them. Many have to cope with the worry and confusion of the unexpected diagnosis of their child at the same time their own haemophilia diagnosis. Sadly, the study also found that the emotional and psychological support needed was often lacking at the point of care.
Peer support networks are an invaluable resource for all people affected by bleeding disorders. For the mothers of children with haemophilia who experience emotional stress and anxiety, they provide an opportunity to connect with people who really know and understand, through their own lived experience, what it is to live with and have a child with a bleeding disorder.
The UK haemophilia societies can help in finding out about sources of support within the bleeding disorders community:
• The Haemophilia Society (UK-wide)
• Haemophilia Scotland
• Haemophilia Wales
• Haemophilia NI
Local Families with Bleeding Disorders, a peer support network based in London and the Home Counties, kindly allowed us to use a photograph of their group in our animation Struggles and Support.
Find out more about Haemnet and what we do! www.haemnet.com
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