According to the Platform for Better Oral Health, oral diseases and oral conditions are the most prevalent non-communicable (or chronic) diseases in Europe. They impact people throughout their life course, with higher prevalence and worse outcomes among vulnerable populations.
In fact, caring for oral and dental health at every stage of life is even more essential for people with congenital bleeding disorders. If left untreated, this patient population can experience significant bleeds in the mouth, resulting in increased complications in their dental treatments. Many patients and treating dentists fear each other, often due to a lack of education on both parts.
Taking adequate steps towards good oral hygiene, then, can be a life-changer for people with bleeding disorders to avoid the risk of undergoing complex and invasive dental procedures. All too often, we hear about serious bleeding complications in the mouth. How can patients do that?
We asked Prof Alison Dougall, Professor and Consultant in Dental Science from Ireland and a longstanding friend of the EHC, to collect her advice for maintaining a healthy smile over the years. Here are some of her top tips:
- Brush your teeth twice a day, especially before you go to bed, and use fluoride toothpaste to avoid cavities!
- If your gums are bleeding, visit a hygienist to get them checked out, as you may be developing gingivitis or gum disease.
- Limit your sugars and fizzy drinks in between meal times to avoid cavities and thinning of tooth enamel.
- Visit your dentist at least once a year so you can catch problems early and avoid extensive treatment, or getting toothache.
- If you are playing a contact sport, wear a mouth guard to avoid trauma to the teeth.
- If you are a smoker, check your mouth regularly and visit your dentist if you have an ulcer that doesn’t heal after 2 weeks – mouth cancer is on the increase, especially in younger people.
- Children should always visit the dentist before their first birthday to check for signs of early decay or developmental tooth defects.
If completely quitting sugar is too hard, how can the damage be reduced?
- Eat sugar during meal time as dessert but NOT an hour later.
- Make sure we have saliva flowing when we are having sugar.
- Use fluoride toothpaste twice a day.
- At the end of the meal, chew gum for 10-15 minutes or eat something containing alkaline (e.g., cheese or grapes).
For more detailed advice see our resource about ‘Eating sugar’.
What if EHC were to make a protocol for dental care for people with inhibitors (relevant for other groups of patients, too)? How does French cheese come into the picture? Read more in our resource about ‘Oral hygiene’.
Is orthodontics at all an option for people with bleeding disorders? Find out more about braces and dental implants in our resource about ‘Orthodontics’.
Who is currently at the biggest risk of dental problems? Spoiler: no, it’s not children. The way people are ageing nowadays poses different problems than a broken denture. Check out our resource about ‘Ageing and dental care’.
In case you experience pain or other issues with oral health, please contact your dentist and haemotologist.
Don’t hesitate to reach out to the EHC if you require any other information.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
