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Genetic and Rare Diseases Information Center (GARD)

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Trismus-pseudocamptodactyly syndrome


Other Names for this Disease

  • Arthrogryposis distal type 7
  • Distal arthrogryposis type 7
  • Dutch-Kentucky syndrome
  • Hecht syndrome
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

My child has trismus-pseudocamptodactyly syndrome. We are very concerned about his trismus. We are interested in receiving any information regarding effective treatment for trismus. 

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is trismus-pseudocamptodactyly syndrome?

Trismus-pseudocamptodactyly syndrome is a disorder of muscle development and function.[1] It is characterized by short muscles and tendons resulting in limited range of motion of the hands, legs, and mouth.[1] Both sporadic occurrence and autosomal dominant inheritance have been reported in the medical literature.[1] The most serious complications of the condition occur as a result of the limited mobility of the mouth.[2] Treatment may involve surgical correction and physical therapy.[1][2] 
Last updated: 4/13/2011

I am very concerned about my son's trismus. How can I learn more about his treatment options?

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.[1][2][3] 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.

AboutFace International
123 Edward Street Suite 1003
Toronto ON M5G 1E2
Canada
Phone: 800-665-3223
Phone 2: 416-597-2229
Fax: 416-597-8494
E-mail: info@aboutfaceinternational.org
Web site: www.aboutfaceinternational.org

FACES: The National Craniofacial Association
PO Box 11082
Chattanooga TN 37401
Toll-free: 800-332-2373
Phone: 423-266-1632
Email: faces@faces-cranio.org
Web site: www.faces-cranio.org

Let's Face It
University of Michigan School of Dentistry Dentistry Library
1011 North University
Ann Arbor MI 48109-1078
E-mail: faceit@umich.edu  
Web site: www.faceit.org

Last updated: 3/6/2009

How can I learn about research involving the treatment of trismus in people with trismus-pseudocamptodactyly syndrome?

The National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. There are no studies investigating the treatment of trismus-pseudocamptodactyly syndrome listed at this time, but check this site often for updates. To search for a study, use "Hecht syndrome OR trismus-pseudocamptodactyly syndrome" as your search term.

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
Toll-free: 800-411-1222
Fax: 301-480-9793
Email: prpl@mail.cc.nih.gov
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.
http://clinicaltrials.gov/ct2/info/understand

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.
http://rarediseases.info.nih.gov/Resources.aspx?PageID=8

Last updated: 4/13/2011

References
  • 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;
Other Names for this Disease
  • Arthrogryposis distal type 7
  • Distal arthrogryposis type 7
  • Dutch-Kentucky syndrome
  • Hecht syndrome
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.