The purpose of this page is to provide information and support
for those afflicted with Klippel-Trenaunay
Syndrome and related disorders. This page is not
intended as medical advice but is the opinion
of it's author.
Any medical decisions should be
carefully discussed with a physician.
If you or your child has been diagnosed with Klippel-Trenaunay Syndrome or you are still seeking a diagnosis
but think KTS is a possibility, this site is for you.
Klippel-Trenaunay Syndrome is a triad of
Port Wine Stain, Hypertrophy (enlargement) and usually either an absence or duplication of a venous structure underneath. Each case is different and there need
not be all three symptoms, bone involvement or massive overgrowth for a KTS diagnosis. Every case that
I have seen is different, KTS can manifest itself in
many different forms.
My name is Erin Rosas and I have KTS that affects
my entire left arm, hand, chest and back. For years
I have been studying this syndrome and developing research and public education projects.
In addition to those projects, I volunteer my services as an advocate for those that are similarly affected.
If you live with a rare syndrome such as this, you will, most often be required to be your own medical expert on your syndrome. These syndromes are so rare that there is very little
"expert" medical help available. Most doctors have no experience with this rare syndrome and can leave you even more confused- unfortunately, this can lead to the doctors'
minimizing problems, missing symptoms and overlooking rare complications and possible treatment options.
There are very few doctors that have had enough "exposure" to syndromes
that affect less than a thousand people to be considered experts.
The purpose of this web-site is to hopefully give you the information that you will need to be your own expert.
Please keep in mind that I am
not a physician, but a researcher relaying what I have learned through interviews of doctors, KTS patients and the literature that is available.Any medical decisions should be made in conjuction with a qualified physician.
The Diagnostic Code
For Klippel-Trenaunay Syndrome is 759.8
Click Here for symptoms commonly associated with KTS.
Click Here for Terms
commonly associated with KTS.
The page is still very much under construction and
may take some time as I myself am fighting this battle.
My hope is to assist if I can and to give the
best information I have collected through my own efforts and those of numerous, kind others.
If you need immediate help,
contact Erin Rosas: (TEL) 352.620.2737
birthmark@geocities.com
Link to Women And Port Wine Stains
Link to Sturge Weber Foundation Web-Site
Link toMinnesota Port Wine Stain Foundation.
