Ahead of World Oral Health Day on 20 March, patients and members of the EHC community shared their experiences navigating dental care with bleeding disorders. Their stories reveal a healthcare system that too often fails to meet their needs, but also point the way toward solutions.
These stories underscore the urgent need for better education, coordination between dental and haematology care, and accessible specialist services for the bleeding disorders community. To learn more about our policy recommendations, read our policy statement on oral health for people with bleeding disorders.
The fear of refusal
Augusto, 49, Portugal (Severe Haemophilia A): “In my childhood, I had a rough time. My dentist refused to inject anaesthesia due to the fear of causing a bleed. As a result, I avoided going to dentist appointments and got lots of tooth cavities.”
Laura, 43, Spain (VWD type 3): “I needed to have a wisdom tooth removed, and they refused to do it. Finally, they referred me to a maxillofacial surgeon through the National Health Service. I also had problems once when I needed a dental cleaning; dentists are slow to understand this type of condition.”
Martin, 61, United Kingdom (Haemophilia A): “I called several local private dentists about seven years ago. Three or four said ‘We suggest you contact your hospital for advice’, and refused to take me on as a patient.”
Eglantine, 25, France (Factor V Deficiency): “I have been refused a few times when I said I had a Factor V Deficiency. Now, I omit to say I have a bleeding disorder. In general, dentists do not know my pathology and do not want to take care of me. Health professionals should be more aware of these pathologies to be able to take good care of patients.”
Knowledge gaps cost us
Marion, 37, Austria (Factor VII Deficiency): “Since Factor VII Deficiency is so rare, no one knows about it. I am fully responsible for having everything under control. A cooperation between a haematologist and a dentist would be great (in a perfect world, where money and time were available for this). Having my wisdom teeth removed, I kept bleeding for hours until my mum got nervous. At that time, I didn’t know about tranexamic acid. I managed with factor infusions every few hours to get it under control. It would have been nice to be warned.”
Cathy, 39, The Netherlands (VWD): “My daughters and I explained to our dentist what it means and where he needs to pay extra attention because we are VWD patients. He had never heard of it before. Every time we visit the dentist, we need to explain to him again and again that he cannot do anything before telling us, so we get the opportunity to think if we need to contact the haematologist. He finds it annoying and keeps telling that a little bleed is not a problem. My daughters are not feeling that comfortable because they don’t have the trust that he will not do anything to make them bleed. The biggest issue, in my opinion, is trust. Dentists need to listen and take you seriously.”
William, 34, United Kingdom (Severe Haemophilia A): “The UK model has moved to a community dental model for routine care. I am not sure my community dentist would know how to handle my dental care if I needed a procedure. I worry my safe dental care relies on me highlighting my bleeding disorder to them and the need to contact the Haemophilia Treatment Centre.”
Berislav, 47, Serbia (Haemophilia B): “A dentist for me who knows my condition would make all the difference. If I have a tooth out, it bleeds for sometimes two weeks or more.”
When it goes wrong
Martin, 61, United Kingdom (Haemophilia A): “As a child, I had multiple teeth removed due to abscesses; the experience for my parents and me was horrific. It felt brutal, as did many other treatments for haemophiliacs at that time. Extractions meant several days in hospital, multiple follow-up visits, only being allowed to eat soft or mushy food and wearing gum shields for weeks.”
Chris, 59, United Kingdom (Platelet Function Disorder TPM4 Variant): “Before anyone would listen to me, that my blood didn’t clot properly, I had multiple teeth extracted, and each time I bled, it would take days for the bleeding to stop.”
Mohammed, 53, Iraq (Haemophilia): “One day, I had bleeding for two weeks because the factor was unavailable.”
What good care looks like
Martin, 61, United Kingdom (Haemophilia A): “I eventually found a great dentist. They are aware of haemophilia and the associated risks during treatment. The experience now is much better.”
David, 48, Austria (Haemophilia A): “The dentist followed the rules given by haemastasiologist when extracting!”
Augusto, 49, Portugal (Severe Haemophilia A): “My hospital opened a stomatology service, and I started to have proper treatment. I had a few tooth extractions on teeth that couldn’t be saved, and everything started to change for the better.”
