In recognition of EDS/HSD Awareness Month, we invite you to explore the intricate relationship between Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) and oral health. Kristina Lusk, a Communications Specialist at The American Institute of Dental Public Health (AIDPH), navigates the daily challenges of living with EDS. Kristina’s personal experiences and unwavering determination have shaped her perspective on the importance of personal advocacy at the dentist’s office. In this blog post, Kristina will share her insights, shedding light on the unique needs of individuals with EDS and the essential role of self-advocacy in dental care.
May is EDS/HSD Awareness Month, a time to shed light on this diagnosis and its impact. As someone living with Ehlers-Danlos syndrome (EDS), I have come to understand the unique challenges it presents, particularly when it comes to oral health. Unfortunately, many dentists are not familiar with rare diseases, leaving patients to advocate for themselves and educate their dentist about their condition. This study has important information about dental providers and their knowledge of treating patients with rare diseases.
EDS is a genetic disorder affecting connective tissue, with thirteen subtypes encompassing a range of symptoms. Common features seen across all types of EDS include:
- Joint hypermobility — Joints have a wider range of motion than the norm, but this does not always cause pain. Joint instability, where the bones of a joint are not secure, can lead to subluxations (partial dislocations), dislocations, or sprains. This feature can occur throughout the body, causing chronic pain that interferes with daily living activities.
- Skin hyperextensibility — The skin can be stretched beyond the norm. Again, this is not always painful. Other skin characteristics that may impact the patient’s day-to-day experience include skin fragility, delayed wound healing, and abnormal scarring.
- Capillary and perivascular tissue fragility — The blood vessels and tissue surrounding them become fragile and break easily, leading to extensive bruising. While not an issue for most EDS patients, those with the vascular subtype experience an increased risk of internal bleeding and rupture of hollow organs.
In 2017, I was diagnosed with hypermobile EDS (hEDS). This diagnosis felt like a missing puzzle piece, and my health history made a lot more sense. Learning more about hEDS became a second job, as I tried to understand how it impacted nearly everything inside my body. Somehow, between reading about sleep disturbances and orthostatic intolerance, I happened upon some information about how EDS affects oral health.
By this time in my life, I had experienced many oral surgeries. The most recent was a gum graft that ultimately failed, leaving a twenty-something-year-old me thinking it was only a matter of time before I lost all of my teeth. I also developed a fear of going to the dentist, hating how tired my jaw felt afterward and how the local anesthetic never seemed to work. While I had never experienced a cavity in my life, it felt like there was always some other issue popping up during my visit. Why couldn’t things just be simple?
The mouth and teeth are not exempt from the impact of EDS. Individuals with EDS might experience issues with their gums and temporomandibular joint (TMJ), leading to uncomfortable and sometimes painful dental visits. EDS patients also report nearly three times the rate of local anesthetic non-response compared to non-EDS patients. While the basis for this resistance is not yet known, the prevalence compels additional research and better pain prevention strategies.
So what do dental professionals need to know about EDS?
- Generalized periodontitis is common in EDS patients. Because periodontal complications can progress quickly, acting early can reduce the chance of tooth loss.
- Fragile mucosa throughout the mouth can lead to pain and excessive gingival bleeding. EDS patients take longer to heal, so extra care should be taken when using dental instruments. Dentists should instruct patients on a gentle brushing technique with an ultrasoft toothbrush. (These are my favorite!)
- Short office visits that prioritize comfort should be scheduled. Joint instability makes TMJ dislocation more likely and the dental chair less comfortable. Regularly check in with your EDS patient to ensure comfort, offering breaks and accommodations when possible. Although we do not know why local anesthesia is less effective in EDS patients, checking in on pain levels and believing your patient when they say their mouth hurts goes a long way.
- Joint pain and limited mobility in the upper extremities can make self-care tasks like brushing difficult. EDS patients need a compassionate provider who will not judge them for things they already feel insecure about.
If you are an EDS patient, you know self-advocacy is essential. It’s likely your dentist is unfamiliar with EDS, which means you need to share about potential dental implications. Your voice matters in ensuring that your unique needs are met.
By prioritizing proactive dental care, seeking knowledgeable dentists, and sharing our experiences, we can promote awareness and improve dental health outcomes for the EDS community. Let’s join forces during EDS/HSD Awareness Month and beyond to support each other on this journey to optimal oral health.
Have a story to share about a disability and your dental experience? Let us know! We would love to share your story with the dental public health community. Email firstname.lastname@example.org for more information.
Resources to share with your dental team: