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Office of Disease Prevention and Health Promotion

Quick Reference to Links:

  1. Understanding Klippel-Trenaunay Syndrome
  2. K-T Around the World
  3. About The K-T Support Group
  4. K-T In The News
  5. Related Links On The Web
  6. Family Links
  7. Supplies
  8. Miscellaneous Files

Understanding Klippel-Trenaunay Syndrome

 Click here to access Information about Klippel-Trenaunay Syndrome. Click here to read a reprint of a summary chapter about Klippel-Trenaunay Syndrome by Dr. David Driscoll, Professor of Pediatric Cardiology, Mayo Clinic, Rochester, MN.
And click here to read an article about chronic pain and K-T by Dr. Driscoll. The following links will provide you with much added information about Klippel-Trenaunay Syndrome. Please take the time to "click" on these valuable sources of information. To return to this page from any link, click at the bottom of the page or click on the "back" button or arrow on your internet program. For information on relevant medical terminology, follow this link. Click here to read the latest review article about Klippel-Trenaunay Syndrome, "Klippel-Trenaunay Syndrome: Spectrum and Management," published in the Mayo Clinic Proceedings, January, 1998. Click here to access MedLine where you may search for articles in the medical literature dealing with Klippel-Trenaunay. Enter "klippel trenaunay" in the Search box and follow the instructions. You will access some of the articles in the bibiography indicated below, as well as more recent articles.You can print out some or all of the list and then contact a medical library (such as a University Hospital might have) to request a copy of the articles you wish to locate. (They may request a fee to copy the article.) Click here for a bibliography of medical articles about Klippel-Trenaunay Syndrome. Click here for a copy of a hand out from Hope Harrison's speech at the 2002 K-T Support Group meeting.

K-T Links from Childrens Hospital Boston

Doctor Fishman speaks on KT procedures
These are large files and can take a while to load. So please be patient.
Dr Fishman describes KTS (length 1:25)
Dr Fishman compares treatments for KTS (length 2:14)
Dr Fishman on post-surgical care (length 1:10)
Dr Fishman on Children's innovation (length 0:40)

More references

Evaluation and management of pain in patients with Klippel-Trenaunay syndrome: a review.
Lee A, Driscoll D, Gloviczki P, Clay R, Shaughnessy W, Stans A.
Pediatrics. 2005 Mar;115(3):744-9. Review.
PMID: 15741381
Text version
PDF version with images
Anomalies of the fingers and toes associated with Klippel-Trenaunay syndrome.
McGrory BJ, Amadio PC, Dobyns JH, Stickler GB, Unni KK.
Department of Orthopedics, Mayo Clinic, Rochester, Minnesota 55905.
J Bone Joint Surg Am. 1991 Dec;73(10):1537-46
Pubmed summary
For full article with images

K-T Around The World
 

About The K-T Support Group:

 For information or to become a member of the K-T Group, e-mail: ktnewmembers@gmail.com
For specific questions, contact the Director Judy Vessey or phone: (952) 925-2596

The K-T Support Group and the Proteus Family Network (www.proteus-uk.org/) work closely together in England. Contact Jean Harrison (j.harrison@peoplepc.co.uk) of the Proteus Family Network.

Visitors to this page from other countries, please contact:

Director: Judy Vessey
Phone Number: (952) 925-2596
Arizona State Coordinator:
Kathy Tremonto: kjtremonto@cox.net
Phone Number: (623) 975-6902
 

K-T In The News:

 Casey Martin in the news.

Rare condition won't stop lively youngster

Letter sent to the St. Petersburg Times by Jill Baldwin

Talking to kids about K-T (From Valerie, a K-T adult)

Amiee Ickes
Proceeds from a bachelor auction are earmarked to help pay the medical expenses for two girls in Blairsville schools.

 

Related Links on the Web:

 Here is a list of sources providing further information on Klippel-Trenaunay Syndrome and/or other rare disorders:
  • The KT Foundation is a group of volunteer advocates for those afflicted with Klippel-Trenaunay Syndrome (KTS.) The Foundation is a working center providing the latest medical news on KTS, an up-to-date list of specialists and accurate information to support individuals with KTS. We strive to support medical research and make options for travel expense assistance available to KTS patients who need medical care from facilities that specialize in treating this disease.
  • To search Mayo Clinic Health Information Network, click here . Do search (bottom of page) check Mayo Clinic box, searching for lasers.
  • Click here to learn more about lymphovenous disorders from Lymphovenous Canada.
  • NORD , 100 Rt.37, PO Box 8923, New Fairfield. CT 06812-8923. NORD is the National Organization for Rare Disorders.
  • The Proteus Syndrome Support Group is a support group for those with the diagnosis of Proteus Syndrome. Klippel-Trenaunay and Proteus Syndrome diagnoses can be confused with each other.
  • The Sturge-Weber Foundation provides information about Sturge-Weber Syndrome, which is characterized by facial port wine stain and neurological abnormalities.
  • The Vascular Malformations Foundation, Inc., 8320 Nightingale, Dearborn Heights, Michigan 48127 phone: (313)274-1243
  • To contact MUMS, Mothers United for Moral Support, a support group for parents of children with rare disorders, click here: mums@netnet.net
  • Click here for a web site about dermatology in the cinema.
  • Matt Nole's Home Page http://www.angelfire.com/oh2/ki ckerboy/ Matt Nole's Page about K-T http://www .angelfire.com/oh2/kickerboy/kliptrensyndrome.html 
  • Click here to view the home page of the Klippel-Feil Syndrome Support Group. This link is provided for those whose search has led them to this page.
  • Click here to view the home page of the Stichting Klippel-Trenaunay Nederland. This link is provided for our friends in The Netherlands.
  • Click here to view the home page of the Girandola , a non-profit organisation dedicated to sharing knowledge on angiomas and vascular malformation. The Director, Dr. Vergelio, is one of most expert surgeon in Italy on KT and other vascular desease. The site address is www.girandola.org, at the moment is only in Italian, in the next months will be released also the English version, that maybe may help some other non-italian speaking Europeans.
 

Family Links:

Families with E-mail addresses that you might wish to contact are:

Adults with E-mail addresses are:

K-T Supplies

 List of Suppliers of Compression Garments

Miscellaneous Files

 List of Books For Children

Office of Disease Prevention and Health Promotion


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