European Haemophilia Consortium (EHC) Women and Bleeding Disorders Committer member and Youth Leadership alumni Evelyn Grimberg took to the Dutch airwaves to discuss women and bleeding disorders. The nationally-syndicated show highlighted the reality that women with bleeding disorders, even in countries with advanced medical systems like the Netherlands, are often undiagnosed or under-diagnosed. The European Haemophilia Consortium and the EHC Women and Bleeding Disorders (WBD) Committee are leading the way to not only reach this part of our community but to lead, encourage and provide a safe atmosphere for discussion. Join us for the First European Women and Bleeding Disorders Conference in Frankfurt, May 24-26.
View the interview in its entirety (in Dutch): https://www.koffietijd.nl/stollingsziekten_bij_vrouwen
TV channel: RTL 4 (Netherlands)
TV program: Koffietijd (coffeetime)
Information about the show: Koffietijd is the daily, live, feel-good morning program that can be seen every day from 10 to 11. Koffietijd informs, inspires and surprises with pleasant conversations, current information, practical advice, delicious recipes and a lot of warmth and humanity. There is even a cook who will make dinner during the show.
Presenter during show: Quinty Trustfull & guest presenter Helga van Leur.
Participation: Evelyn Grimberg and Karin van Galen (Internist-Haematologist). Ms. Van Galen works at UMC Utrecht at the van Creveldkliniek. Her focus is on women and bleeding disorders. Ms. Van Galen initiated the Women and Bleeding Disorder Committee of the European Association for Haemophilia and Allied Disorders (EAHAD) (http://eahad.org/eahad-launches-working-group-on-women-and-bleeding-disorders/). She also assisted with the European Haemophilia Consortium survey on women (first publication came out this week). Karin van Galen started with information about her team and a website with information about women and bleeding disorders. This website is for physicians.
Topic: What we wanted to do was to bring more attention to heavy blood loss during menstrual cycles and under-diagnosis of bleeding disorders.
Karin briefly explained what a bleeding disorder is and where the problem can be. She also expressed that for women it is substantially more difficult because every month they have a bleeding when they have their period. Karin also listed other symptoms like nose bleeds, bruising and bleeding after surgery / visiting the dentist.
I talked about my personal experience and the challenges I face, including changing clothes often, low blood levels, being hospitalised and blood transfusions.
We focused on the fact that unless there are symptoms, diagnoses are often delayed. However, symptoms do not always appear together. These symptoms may include gum problems at the dentist, heavy periods, nose bleeds and so on. Sadly, in our society, a heavy period is a subject that is not easy to talk about. Also, this is not always recognised as an issue by women themselves, because it is unidentified as their mother or sisters have the same issues. What is heavy blood loss? When do you bleed too much? We talked about the menstruation score card where you can screen yourself for a possible bleeding disorder. (see page 13 of the brochure – in Dutch).
One primary question of the presenter included how often do we see this? Karin said that 1 in 100 women has a bleeding disorder, and that having heavy blood loss during a period happens quite often in women. Karin also said that 1 out of 5 women who go to the gynaecologist with heavy blood loss has a bleeding disorder.