Treacher-collins syndrome
Living with
What is the life expectancy in Treacher Collins syndrome (TCS)?
The life expectancy in those with Treacher Collins syndrome (TCS) is not shortened compared to the general population as long as breathing problems in infancy are managed well.
To learn more about management for breathing issues related to Treacher Collins syndrome, consult a team of doctors in a craniofacial clinic. A craniofacial team in your area can be found by talking to doctors about who which specialists they recommend or using the list provided by FACES: The National Craniofacial Association under "Medical Centers".
References
- Treacher Collins Syndrome - NORD (National Organization for Rare Disorders). (2013). Retrieved February 29, 2016, from http://rarediseases.org/rare-diseases/treacher-collins-syndrome/
- Katsanis SH, Jabs EW. Treacher Collins Syndrome. 2004 Jul 20 [Updated 2012 Aug 30]. In: Pagon RA, Adam MP, Ardinger HH, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2016. Available from: http://www.ncbi.nlm.nih.gov/books/NBK1532/
More Living with Content
What type of psychological/ adjustment issues can those with Treacher Collins syndrome (TCS) face?
What type of psychological/ adjustment issues can those with Treacher Collins syndrome (TCS) face?
Individuals with TCS report experiencing undesirable attention and sometimes rejection, due to their facial appearance. These experiences have been associated with problems like depression, anxiety, psychological distress and lower quality of life. Studies have shown that children and adolescents reported improved self image and improved social acceptance after facial reconstructive surgery. Children may also benefit from working with a trained psychologist.
Psychologists are typically part of the multi-disciplinary craniofacial team. A craniofacial team in your area can be found by talking to doctors about who which specialists they recommend or using the list provided by FACES: The National Craniofacial Association under "Medical Centers".
References
- Geirdal, A. Ø., Saltnes, S. S., Storhaug, K., Åsten, P., Nordgarden, H., & Jensen, J. L. (2015). Living with orofacial conditions: psychological distress and quality of life in adults affected with Treacher Collins syndrome, cherubism, or oligodontia/ectodermal dysplasia-a comparative study. Quality of Life Research, 24(4), 927-935.
Do people with Treacher Collins syndrome (TCS) have intellectual disabilities or developmental delay?
Typically, people with Treacher Colllins syndrome (TCS) have normal intellect. However, mild developmental delay has also been described in some people. Speech and language delays related to hearing loss or cleft palate may be present.
Speech pathologists are often part of the multidisciplinary craniofacial team that works with people who have Treacher Collins syndrome. A craniofacial team in your area can be found by talking to doctors about who which specialists they recommend or using the list provided by FACES: The National Craniofacial Association under "Medical Centers".
References
- Treacher Collins Syndrome - NORD (National Organization for Rare Disorders). (2013). Retrieved February 29, 2016, from http://rarediseases.org/rare-diseases/treacher-collins-syndrome/
- Katsanis SH, Jabs EW. Treacher Collins Syndrome. 2004 Jul 20 [Updated 2012 Aug 30]. In: Pagon RA, Adam MP, Ardinger HH, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2016. Available from: http://www.ncbi.nlm.nih.gov/books/NBK1532/
