Other Names for this Disease
- Arthrogryposis distal type 7
- Distal arthrogryposis type 7
- Dutch-Kentucky syndrome
- Hecht syndrome
Your QuestionMy child has trismus-pseudocamptodactyly syndrome. We are very concerned about his trismus. We are interested in receiving any information regarding effective treatment for trismus.
We have identified the following information that we hope you find helpful. If you still have questions, please contact us.
Questions on this page
Limited information regarding the treatment of Hecht syndrome is available in the medical literature. While there have been reported cases of improvement of mouth mobility following surgery and physical therapy, optimal treatment of Hecht syndrome has not been well established. We recommend that you speak with your son's physician to learn more about his treatment options and to find your nearest head and neck surgeon. The following organizations may also be able to help you find your local specialist.
123 Edward Street Suite 1003
Toronto ON M5G 1E2
Phone 2: 416-597-2229
Web site: www.aboutfaceinternational.org
You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling the toll-free number listed below to speak with a specialist, who can help you determine if your son is eligible for any clinical trials.
Patient Recruitment and Public Liaison Office (PRPL)
NIH Clinical Center
Bethesda, Maryland 20892-2655
Web site: http://clinicalcenter.nih.gov/
If you are interested in enrolling your son in a clinical trial, you can find helpful general information on clinical trials at the following ClinicalTrials.gov Web page.
Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases Research (ORDR), part of the National Institutes of Health.
- Carlos R, Contreras E, Cabrera J. Trismus-pseudocamptodactyly syndrome (Hecht-Beals' syndrome): case report and literature review. Oral Dis. 2005 May;
- Lefaivre JF, Aitchison MJ. Surgical correction of trismus in a child with Hecht syndrome. Ann Plast Surg. 2003 Mar;
- Gasparini G, Boniello R, Moro A, Zampino G, Pelo S. Trismus-pseudocamptodactyly syndrome: case report ten years after. Eur J Paediatr Dent. 2008 Dec;