Giving a voice to women affected by haemophilia
World Hemophilia Day takes place every year on April 17, providing an important opportunity to unite the global haemophilia community in raising awareness and increasing support for those living with this and other bleeding disorders. This year’s theme, ‘Hear their Voices,’ brings attention to the millions of women and girls who live with a bleeding disorder or have someone in their lives who does.
Women and haemophilia
Haemophilia is an inherited, serious bleeding disorder where a person’s blood does not clot properly, leading to uncontrolled bleeding that can occur spontaneously or after minor trauma, and lead to serious joint damage if not properly controlled. For many years, people believed that only men could have symptoms of haemophilia and women were just carriers of the haemophilia gene. As knowledge about haemophilia increased, so did the understanding that haemophilia can occur in women too, and that women who are carriers of the haemophilia gene can also experience bleeding disorder symptoms that require treatment. As this aspect of haemophilia has only been recognised more recently, the precise number of women who have symptoms of haemophilia is currently not known.
To learn more about this, we met with Dr Danielle Nance, a haematologist at the Arizona Bleeding Disorders Health and Wellness Center, Phoenix, USA. Dr Nance shared her own personal experience as a person living with haemophilia A, as the mother of a son with haemophilia A, and as a treating physician of people with bleeding disorders. In particular, she explains, this condition can be especially difficult for women due to the impact haemophilia has on reproductive bleeding, which can even affect fertility.
My big hope for the women who are having symptoms of bleeding is that they recognise the symptoms and ask for help, so we can take really good care of women whether they have a mild bleeding disorder or a severe bleeding disorder, and really help preserve their fertility if they want children.
Women in the haemophilia community
Dr Nance explains the importance of getting support when diagnosed with this condition. She first volunteered in the haemophilia community—who were mostly men—during college. Meeting others who knew about haemophilia and who could understand her experience had a big impact on her life.
We shared a common condition and the brotherhood which they offered to me—their love, their understanding and their unconditional acceptance of me—changed my life and made it so haemophilia, which I saw as a weakness, now became a strength. This strength ultimately allowed me to fulfil my hopes and dreams, and my desire to become a physician.
Along with those who are living with haemophilia themselves, women are also relatives and partners to people with the disorder. They play a vital role as caregivers, and in supporting their loved ones with haemophilia, helping them to live their lives with as few limitations as possible.
No matter how they are involved, a lifelong condition such as haemophilia has a huge impact on women’s lives. Roche is proud to sponsor World Hemophilia Day and join the World Federation of Hemophilia, and the entire community, in supporting women and girls affected by bleeding disorders.
To learn more about World Hemophilia Day and the World Federation of Hemophilia visit their website: http://www.wfh.org/en/whd