Dutch Kentucky Syndome/Trismus pseudocampodactyly - Rare Disorders Message Board

rachelbethu1 · 06-30-2003, 07:39 PM

My son and I have a rare disorder called Dutch Kentucky Syndrome (Trismus Pseudocampodactyly, Hecht's/Beals Syndrome). It involves the shortening of the tendons of the feet, hands, and jaw, and shallow hip sockets. My son's mouth opening is so small, he can barely eat. I am looking for anyone that I can talk to about it. Everyone I know that has it is somehow related to me through the Dishman geneological line. I am also looking for treatments.

zuzu8 · 07-03-2003, 01:07 AM

Hi- I found the following link to rare disorders: [url="http://www.kumc.edu/gec/support/"]http://www.kumc.edu/gec/support/[/url]

If you scroll down to Connective Tissue Conditions, it lists Beal's Syndrome. Click. Maybe this will lead you somewhere helpful.

zuzu xxx

PS- I got that link from Medline's website which I can post for you because it's pre-approved by the moderators of HealthBoards. It's an amazing resource for information on diseases, health issues, drug info, and also will give you links to NIH clinical trials and Mayo Clinic information...
[url="http://www.nlm.nih.gov/medlineplus/healthtopics.html"]http://www.nlm.nih.gov/medlineplus/healthtopics.html[/url]

Also try this:
[url="http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?CMD=search&DB=PubMed"]http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?CMD=search&DB=PubMed[/url]

For the above link, when you get there, type in Dutch Kentucky Syndrome in the search box at the top.

Best of luck....zuzu xxx

[This message has been edited by zuzu8 (edited 07-03-2003).]

zuzu8 · 07-03-2003, 01:58 AM

Wait...I can't seem to stop....(!)

One more resource;

The National Organization of Rare Disorders, Inc. ® (NORD). at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site

[url="http://www.rarediseases.org/"]http://www.rarediseases.org/[/url]

zuzu xxx

rachelbethu1 · 07-26-2003, 12:32 PM

An update on the search for my son's treatment. we were turned down by The Shriner's becausehe is not affected by the feet, hips or hands part of this disease.

zuzu8 · 07-27-2003, 11:58 AM

Is your son's condition limited to the face and jaw? Also known as Camptodactyly-limited jaw excursion?

zuzu