Oral Health Management

Oral diseases can significantly affect both health and quality of life. Preventing oral disease is essential for supporting the well-being of individuals with a Chromosome 8p Disorder.

Individuals with cognitive, developmental, or physical delays who struggle to understand, manage, or cooperate with preventive oral health practices are at a higher risk of developing dental conditions. These conditions include:
  • Build-up of calculus resulting in increased gingivitis and risk for periodontal disease
  • Enamel Hypoplasia
  • Dental Caries
  • Oral Aversion and Behavior Difficulties
  • Dental Crowding
  • Malocclusion
  • Anomalies in tooth development, size, shape, eruption, and arch formation
  • Bruxism and Wear Facets
  • Fracture of Teeth1

The following conditions have been reported by multiple independent sources; however, they have not yet been confirmed at the population level, and it is unclear if they are specific to Chromosome 8p Disorders.

  • Bruxism – A condition where you grind, gnash, or clench your teeth. Bruxism can occur unconsciously during the day (awake bruxism) or while you sleep (sleep bruxism).
  • High Palate – A condition where the roof of a person’s mouth is positioned higher than that of the general population.
  • Overbite – A condition where the upper teeth overlap the lower teeth more than they should.
Providers should follow standard practices for managing oral health in individuals with a chromosome 8p disorder.

Dental Management
  • Patients should begin regular visits with a dental provider at an early age, ideally before 12 months of age or 6 months after the first tooth eruption.
  • Dentists should collaborate with a patient’s other healthcare providers. When necessary, these providers should be consulted regarding medications, sedation, general anesthesia, and any special restrictions or preparations needed to ensure the safe delivery of oral health care.

Preventative Oral Care
  • If a patient is unable to adequately perform oral care for themselves, a caregiver should assist ensuring optimal care is given.
  • Brushing with a fluoridated toothpaste twice daily helps prevent cavities and gingivitis.
  • If a patient’s sensory issues make the taste or texture of fluoridated toothpaste intolerable, options such as a toothpaste without sodium lauryl sulfate (SLS) to reduce foaming, a fluoridated mouthrinse, or an alternative like casein phosphopeptide-amorphous calcium phosphate (CPP-ACP) can be applied using a toothbrush.
  • Toothbrushes can be adapted to help individuals brush their teeth independently. Electric toothbrushes and floss holders may also improve patient participation.
  • A diet that doesn’t promote tooth decay is essential for the long-term prevention of dental disease. When a diet high in carbohydrates or the use of high-calorie supplements is medically necessary (e.g., to promote weight gain), ask your dentist to provide strategies to reduce the risk of cavities.1
  1. American Academy of Pediatric Dentistry. Management of dental patients with special health care needs. The Reference Manual of Pediatric Dentistry. Chicago, Ill.: American Academy of Pediatric Dentistry; 2023:337-44.

 

Moving Mountains Conference Presentation:

 

Project 8p Foundation’s Share What Works Series:

Micrognathia

Micrognathia is an undersized lower jaw, leading to a smaller chin and often resulting in an overbite.
Micrognathia is typically present at birth, but it can occur later in life. The primary sign of micrognathia is a small lower jaw. Other commons symptoms include:
  • Trouble Feeding
  • Prolonged Feeding
  • Falling behind on the growth curve
  • Obstructive Sleep Apnea
  • Trouble Sleeping
  • Slow Weight Gain
It is possible for Micrognathia to correct itself through growth, when this happens it usually occurs between 6 and 18 months of age.1

Micrognathia has been reported by multiple independent sources; however, it has not yet been confirmed at the population level, and it is unclear if they are specific to Chromosome 8p Disorders.

Providers should follow standard practices for managing Micrognathia in individuals with a chromosome 8p disorder.

Treatment depends on the symptoms caused by the small jaw or the potential future impact. Early intervention is typically recommended for better outcomes.

Non-surgical treatments are typically effective:

  • Monitoring and watching growth
  • Orthodontic treatment from a craniofacial orthodontist

In cases where non-surgical options are insufficient, surgical intervention may be necessary. One common procedure is Mandibular Distraction Osteogenesis, which is used to enlarge the jaw.1

  1. Children’s Hospital Colorado, Cleft and Lip Program: Micrognathia

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This visualization is powered by research sponsored by Project 8p and survey data collected from the Chromosome 8p Registry, representing insights from a total of 120 8p heroes. It is part of the soon-to-launch Insights Portal, designed to offer advanced tools for data analysis, access, and visualizations, accelerating research and discovery for chromosome 8p disorders.

Add your Piece to the Puzzle

The My Hero Initiative invites families to share their 8p Hero’s journey, helping us uncover valuable insights into chromosome 8p rearrangements. Our data is only as strong as our community’s contributions. Your participation deepens our understanding, guiding more informed care and treatment options. By joining the My Hero Initiative, you’re helping us live our mantra: Together Towards Treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.