Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Trismus-Pseudocamptodactyly Syndrome

What is Trismus-Pseudocamptodactyly Syndrome?

Trismus-Pseudocamptodactyly Syndrome is a rare genetic disorder characterized by the inability to completely open the mouth and abnormally short muscle-tendon units in the fingers.

 

Trismus-Pseudocamptodactyly Syndrome is a rare genetic disorder characterized by the inability to completely open the mouth and abnormally short muscle-tendon units in the fingers.
Acknowledgement of Trismus-Pseudocamptodactyly Syndrome has not been added yet.
Prevalence Information of Trismus-Pseudocamptodactyly Syndrome has not been added yet.
Synonyms for Trismus-Pseudocamptodactyly Syndrome has not been added yet.
genetic.
Symptoms for Trismus-Pseudocamptodactyly Syndrome has not been added yet.
Diagnosis of Trismus-Pseudocamptodactyly Syndrome has not been added yet.
Diagnostic tests of Trismus-Pseudocamptodactyly Syndrome has not been added yet
Treatments of Trismus-Pseudocamptodactyly Syndrome has not been added yet.
Prognosis of Trismus-Pseudocamptodactyly Syndrome has not been added yet.
Tips or Suggestions of Trismus-Pseudocamptodactyly Syndrome has not been added yet.
References of Trismus-Pseudocamptodactyly Syndrome has not been added yet.
hecht syndrome Created by crystalatkisson
Last updated 3 Aug 2011, 03:32 PM

Posted by crystalatkisson
3 Aug 2011, 03:32 PM

as far as i know, which i pretty educated on it. im not aware of any concerns in the heart area but being its a muscle issue maybe something i need to look closer into. i would love to talk with you more. ive been waiting for a long time to find people.. please feel to contact me.

hecht syndrome Created by crystalatkisson
Last updated 26 Jun 2011, 05:12 AM

Posted by wcarylan
26 Jun 2011, 05:12 AM

hello my family was just dionosed with this disorder as well but cannot find anyone who knows about it struck in a rut im trying to find out if this disorder can affect the heart muscles any advice would help hope u come back on soon to talk like to see what your knowledge about this if any

Posted by crystalatkisson
25 May 2011, 01:57 PM

i was seeking to make connections with other people who also have this condition in hope to bounce ideas off each other. can anyone help??

Community Resources
Title Description Date Link

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

Im a mother a a son who has this syndrome. Also its passed down for generations in my family.
Hi my name is karisa my husband has trismus psuedocamptodactyly also known as dutch kentucky syndrome or hecht syndrome and im trying to find anybody else with it or anybody who knows something...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

hecht syndrome

Created by crystalatkisson | Last updated 3 Aug 2011, 03:32 PM

hecht syndrome

Created by crystalatkisson | Last updated 26 Jun 2011, 05:12 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.