The need to change perception
By Naja Skouw-Rasmussen
Why we need a European conference on women and girls with bleeding disorders
Let me invite you to put yourself in the shoes of a young woman, 20 years of age.
You recently moved away from home to begin your dream study to become a teacher. Once again, you find yourself visiting your general practitioner (GP) because you are extremely tired and your periods are heavy and exhausting – you can just about mobilise enough energy to move between the bedroom, toilet, and kitchen, and have no mental capacity to be with your new friends at uni.
It is your first visit to this GP clinic in the new city you have relocated to. You meet a young doctor and begin to explain how you feel. The doctor suggests running some blood tests to check for anaemia and other things. You leave the clinic without much hope. This is perhaps the fifteenth time over the last ten years you have talked to a doctor and blood tests have been done. The conclusion is always that you just bleed more than normal, so please take iron tablets.
Finally, a diagnosis
Next week you are back at the clinic and the young doctor has your results. “Have you ever heard about the bleeding disorder von Willebrand’s?” the doctor asks. “Fon-what?” you burst out.
A sudden heat in your body, cold sweat in your hands.
The doctor begins to explain how different components in your blood make a clot form. The blood test shows you are missing some of them, but this can be helped with medication. She asks you some questions about bruising and bleeding from the mouth and nose, and you begin to understand that all these episodes are connected. You feel a sense of dizziness and relief when the doctor refers you to a specialised clinic where the blood samples can be better examined and they can give you a correct diagnosis.
From there everything moves fast. The clinic confirms the diagnoses of von Willebrand’s and sets up a better management plan for your periods – which means you can focus on your education, finding new friends and settling into your new city. The doctor at the clinic also recommends you reach out to the local patient organisation to meet others with the same condition as it might be useful to learn how others cope.
But why did it take so long?
After a while, the feeling of relief mixes with a loss of faith in the medical community. Why did it have to take more than 15 visits to the doctor and a change of clinic before someone took notice and found an answer?
With a diagnosis delay of 8-16 years for girls and women with bleeding disorders compared to their male counterparts, there is no equality for people with bleeding disorders [1]. Historically and today, girls and women must fight for treatment and care even after receiving a diagnosis.
It ultimately comes down to the lack of recognition and acknowledgement of the experiences girls and women have with bleeding episodes. The bleeding is normalised or even worse dismissed, leaving affected girls and women with a sense of complaining and putting them at risk of complications in trauma, in operations and in particular post-partum haemorrhage.
A call for change
The misconception about bleeding disorders in girls and women must stop! One step is to host conferences like the European Conference on Women and Bleeding Disorders organised by the European Haemophilia Consortium. Events like this bring together patients, patient organisation leaders, healthcare professionals, pharma representatives, and academics. Importantly, they create a forum in which the unmet needs and current treatment and care can be debated.
There are still a lot of gaps in our knowledge. Data on women and girls with bleeding disorders has not been collected systematically through the established registries, and their expressed unmet needs have not been appreciated. This leaves both individual people and the collective group with poor quality of life.
My hope is that the broader community will truly listen, recognise the challenges experienced by girls and women with bleeding disorders, and be a part of the solution to ensure equitable diagnosis, treatment and care for all people with bleeding disorders irrespective of gender.
References
- van Galen K, Lavin M, Skouw-Rasmussen N, et al. European principles of care for women and girls with inherited bleeding disorders. Haemophilia 2021; 27: 837–847. doi: 10.1111/hae.14379
Further reading
A series of reports from the Second European Conference on Women with Bleeding Disorders, guest edited by EHC President Declan Noone, are published in issue 9(1) of The Journal of Haemophilia Practice:
- Skouw-Rasmussen N, Grimberg E, Noone D. The Second European Conference on Women and Bleeding Disorders, Basel, Switzerland, 10–12 May 2022. doi: 10.2478/jhp-2022-0014
- Noone D, d’Oiron R. Monitoring to improve quality of life in women with bleeding disorders. doi: 10.2478/jhp-2022-0015
- Radhakrishnan S, d’Oiron R. Ageing and women with bleeding disorders. doi: 10.2478/jhp-2022-0016
- Dougall A, Frenzel L. Focus on musculoskeletal health in women with bleeding disorders. doi: 10.2478/jhp-2022-0017
- Pollard D, Khair K. The Cinderella Study: women’s lived experience of bleeding disorders – CSL Behring Symposium. doi: 10.2478/jhp-2022-0018
- Grimberg E. Advocacy worldwide for women with bleeding disorders. doi: 10.2478/jhp-2022-0019
About the author
Naja Skouw-Rasmussen is Think Tank Officer at the European Haemophilia Consortium.
Image: Unsplash/Melissa Askew