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Duchenne Muscular Dystrophy

På bilden syns en hand som håller i en eltandborste.

This is the text from the oral care programme for people with Duchenne muscular dystrophy (DMD)

Mun-H-Center, a Swedish orofacial resource center for rare diseases and a specialist dental clinic, has gathered knowledge and experience over many years regarding the clinical care of patients with Duchenne Muscular Dystrophy (DMD). This document compiles the most important experiences related to the treatment and care of this group of patients.


Duchenne Muscular Dystrophy is a neuromuscular disease caused by a lack of dystrophin, which stabilises muscle fibres. The absence of dystrophin leads to a breakdown of the muscle fibers. Muscles are replaced by connective tissue and fat. The disease is inherited through the X chromosome. Women who carry the gene have no symptoms. In about one-third of all cases, the disease occurs through new mutations.

Symptoms usually appear around the age of three. The child develops a difficulty running, jumping and getting up from the floor. Generally, boys stop walking between 10 and 12 years of age. Over time, muscle weakness increases. Respiratory muscles weaken and lung function deteriorates. Heart function may also be affected. Weakness occurs in the large chewing muscles, facial muscles and tongue. Bite abnormalities develop progressively due to muscle weakness and changes in tongue morphology. The jaws increase in width, more in the lower jaw than the upper, leading to crossbite. It is common for the bite to open in the side sections and later in the front teeth area. The ability to open the mouth may be restricted.

Sensitivity to malignant hyperthermia has been reported and should be considered during anaesthesia. Concentration difficulties and developmental disorders may occur. Extensive research is ongoing to lessen and slow down symptoms.

Dental care for people with DMD

Need for preventive dental care

It is important for children to establish early contact with dental care, preferably with a paediatric dentist. Individuals with DMD require regular and enhanced dental care to maintain good oral health. It is important to record the ability to open the mouth during annual dental check-ups. If there is a decrease in the ability to open the mouth, jaw joint function should be investigated and appropriate treatment initiated.

Risk factors for oral health

A reduced ability to open the mouth can make it difficult to perform oral and dental care. Due to this, it is important to plan ahead for potential extractions of molars including wisdom teeth. If oral motor function is affected, one should be aware that food may remain in the oral cavity after meals, increasing the risk of caries and periodontitis. Inactive oral motor function often leads to increased calculus formation. Reflux and nausea can cause erosion damage to the teeth. In later stages of the disease, many require respiratory support. Respiratory support combined with an open mouth at rest increases the risk of dry mouth.

Guidance for relatives, assistants and caregivers

People with DMD may need help with their oral care at home. To do this in the best possible way, they need practical guidance from dental care professionals and access to oral
care aids.

  • Use a lift or other aid if needed to transfer the patient from a wheelchair to the treatment chair.
  • Sometimes it may be more relaxed and more reassuring for the patient to be treated in their specially adapted wheelchair.
  • Use positioning cushions (such as Tumle dental cushions) to create stability in the treatment chair.
  • If the patient has cognitive difficulties, consider using visual support in your appointment information.
  • Allocate plenty of time for the visit.
  • Adjust the visit time to the patient’s routine/daily rhythm.
  • Assistance is often needed for both the dental hygienist and the dentist.
  • Treat the patient in a sitting or semi-sitting position:
    • If the patient experiences discomfort lying down, for example, due to reduced respiratory function.
    • If there is a reduced ability to cough and swallow.
  • Work in short sessions:
    • If the patient gets tired in the jaw from keeping the mouth open.
    • If the patient needs to change their seated position or head placement.
    • If the patient has breathing or phlegm production issues.
    • If the patient is generally affected and tired.
  • Tools to keep on hand, to facilitate dental treatment:
    • Bite support to aid in keeping the mouth open and
      relaxing the jaw.
    • Mouth angle expander for better visibility and to facilitate opening.
    • Oral wipes to clean the mouth if there are difficulties with swallowing or spitting.
  • Annual dental check-ups (more frequently if needed).
    • Keep a record of maximum mouth opening ability, as well as maximum lateral and protrusive movements of the lower jaw,
      on a regular basis.
    • Plan ahead for potential extractions of molars if the ability to open the mouth starts to decrease.
  • Supportive and individualised treatment by a dental hygienist,
    on a regular basis.
  • An orthodontist should be involved early on, to plan potential interceptive or corrective treatment.
  • Indications for orthodontic treatment can include reducing severe crowding, or mild crowding, to facilitate good oral hygiene.
  • Enhanced prophylaxis during the treatment period.
  • Often requires lifelong retention, which should be followed.
  • If there are signs of reduced mouth-opening ability, stretching of the jaw muscles should be initiated as soon as possible. Consult a specialist dentist if needed.
  • Stretching the jaw muscles:
    • Older children and adults can be encouraged to maximise jaw mobility by opening wide and moving the lower jaw forward and sideways (see exercise programme).
    • Using fingers.
    • Using tools (Therabite or Jaw trainer).
  • Note: Stretching/exercising should be carried out without causing
    any pain.
Time to train the jaw!
Exercise programme for:
Open your mouth as wide as you can.
Push the lower jaw forward.
Move the jaw to the side...
...and to the other side.
Open your mouth as wide as you can again.
Use your hand to stretch...
...or your Therabite...
...or Jaw trainer.
Feel free to contact us if you have questions!
Best regards,
(fill in the caregiver’s name
and the clinic’s phone number)
  • Treat the patient in a semi-sitting position with the head tilted to the side.
  • Be extra attentive during treatment to prevent anything from going down the throat. Consider using two suction devices. Assistance is important.
  • Consider using a dental dam to reduce the risk of aspiration.
    Consider drying out the mouth with an oral wipe if the patient cannot spit or rinse their mouth.
  • It is important to remove supra tartar, which otherwise risks coming loose and entering the airways, to avoid the risk of pneumonia.
  • It is extra important to maintain good oral hygiene if there is a risk of the patient aspirating their saliva.
  • Always contact the responsible physician before any sedation.
  • Muscle relaxants such as Midazolam are contraindicated.
  • Before anaesthesia:
    • Inform the anaesthesiologist about complicating factors such as reduced mouth opening ability and the need for extra postoperative monitoring.

Sensitivity to malignant hyperthermia has been reported and should be considered during anaesthesia.

  • Assist the patient with applying for dental care support. In Sweden, this is referred to as N dental care.
  • Let the patient show how they manage their oral hygiene.
  • Instruct accompanying individuals on how they can assist with oral hygiene.
  • Instruct the patient on an adapted working position and suitable aids for oral care at home, such as an electric toothbrush, double action toothbrush, grip enlarger, mouth angle expander and tools for stretching the jaw muscles.
  • When respiratory support is used, it can be difficult to perform oral hygiene in the upper front teeth area. It is important to provide thorough instructions as well as lubrication of the lips and dry mucous membranes.
  • If needed:
    • Provide practical guidance on oral care to accompanying carers
      and assistans.
    • An individually designed pictorial support can be used to help remember oral care routines.
    • Instruct on an adapted working position and suitable aids for oral care at home.
    • It is important to establish a good relationship with assistants. Motivate and provide feedback on their efforts.
    • One way to motivate can be to document oral health continuously with photos.

Ahlborg, B. (2003). Mouth- and dental care in Duchennes muscular dystrophy. Tandläkartidningen, 95(3), 38-43.

Ahlborg, B., Johansson Cahlin, B., Mårtensson, Å. & Kroksmark, A-K. (2012). Evaluation of a mechanical stretching device, the TheraBite, in patients with restricted maximal mouth opening and neuromuscular disorders: a case series. Journal of Disability and Oral Health, 13(4), 172-173.

Ahlborg, B., Carlsson, A., Kroksmark, A-K., Lundälv, E., Persson, M. & Zellmer, M. Hjälpmedelsutprovning vid mun- och tandvård. Mun-H-Center förlag 2011.

Egli, F., Botteron, S., Morel, C., & Kiliaridis, S. (2018). Growing patients with Duchenne muscular dystrophy: Longitudinal changes in their dentofacial morphology and orofacial functional capacities. European Journal of Orthodontics, 40(2), 140-148.

MHC-basen, Mun-H-Centers databas för sällsynta hälsotillstånd. Retrieved 2020-03-31 from:

Skandinaviskt konsensusprogram för Duchennes muskeldystrofi (2015) Rehabiliteringscenter for Muskelsvind. Retrieved 2020-03-31, from:

Socialstyrelsens kunskapsdatabas om sällsynta hälsotillstånd. Retrieved 2020-03-31, from:

Van Bruggen HW. (2015). Mandibular function in neuromuscular disorders. Doctoral thesis, chapter 8, Ipskamp Drukkers, Nijmegen.

About the oral care programme

Authors: Anna Ödman Roussakis, specialist dentist in orthodontics, Annette Carlsson, dental hygienist, Lisa Bengtsson-Stelzer, speech language pathologist, and Åsa Mårtensson, hospital dentist, Mun-H-Center.

Layout and photos: Inga Svensson, previous communicator, Mun-H-Center.

Illustrations in the exercise program: Komhit.

Translation: Hanna Samara, communicator, Mun-H-Center.

Cover image: Eva Kraft.

Print: 2024

Updated: 2024-06-04 14:23