Putting a spotlight on the mouth – World Oral Health Day 2021
As you may know, this patient population, if left untreated, can experience significant bleeds, including in the mouth. However, when properly managed, these patients shouldn’t face any increased complication in dental health. Unfortunately, many patients and treating dentists fear each other, often due to a lack of education on both parts. This results in:
1) Dentists being reluctant to provide adequate oral care to patients with these disorders for fear of causing bleeds and;
2) Patients not taking adequate steps towards good oral hygiene for fear of bleeds. This often results in poor oral health, followed by patients needing more complex and invasive dental procedures, which reinforces their fear in dental care and strengthens the myth of them being complex and difficult patients.
This vicious circle leads to patients facing unnecessary complications, loss of confidence and poor quality of life.
On World Oral Health Day, we spoke with our longstanding and dedicated friend of the EHC, Dr Alison Dougall, to get her advice for maintaining a healthy smile and mouth!
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! Wear a mouth guard if you are playing a contact sport to avoid trauma to the teeth! 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. Mouth cancer is on the increase, especially in younger people. If you are a smoker, check your mouth regularly for early signs and visit your dentist if you have an ulcer that doesn’t heal after 2 weeks. Visit your dentist at least once a year so you can catch problems early and avoid extensive treatment or getting toothache. Children should always visit the dentist before their first birthday to check for signs of early decay or developmental tooth defects.We know how important good oral hygiene is for people with bleeding disorders and the EHC are committed to including dental education in our meetings! We will be planning a dental education workshop later in the year – stay tuned to EHC communication channels for more 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.
