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CMTC - finding a doctor

LexVanDerHeijden
0 Recommendations

CMTC is a rare skin disease with complications which vary from cosmetical up to and including death. Since 22 January 1997 a not-for-profit patient support organisation, based in the Netherlands, is active world wide to support CMTC patients and their families.

CMTC members are offered a free medical examination in the Netherlands. Members from eg. the USA, UK, Norway, Denmark and Croatia have already experienced this very special offer. In some cases two free air fare tickets can be arranged.

Please visit our bilingual website: www.cmtc.nl.

Explore topics in this discussion:

Cancer Hemihypertrophy

3 replies

TPH

My niece who is 2 1/2 years old was diagnosed with CMTC at birth. Her doctors say it is a mild case.
She has the mottled skin, one leg/foot is bigger than the other, and also has speech difficulities.
After reading so many articles related to this disease, we are very concerned.
She has a doctor at Scripps (Southern California), that she has been seeing, but are wondering if you know of any other specialists in the area.
We are also looking for support groups, and other people in the area to talk to.
Baby Reese and her family would be very appreciative for any help suggested...

LexVanDerHeijden

We are the only support group worldwide as far as I know regarding CMTC (there's also an UK based M-CMTC group).

Where are the markings located? Also in her face (eg. near the eyes)?

We offer our members a free medical examination in the Netherlands (we have done this for over 15 patients from the UK, USA, Canada, Greece, Denmark, etc.).
Please consider this option.

ednbec

Dear TPH,

A year ago last March we took Lex up on this offer and went to the Netherlands. It was well worth the trip and we learned a lot about our grand daughters case that we didn't know. Each case of CMTC is unique in that each patient has their own variables to consider.

The larger foot in your niece's case could be Hemihypertrophy as this does effect some of the CMTC patients. A good source for information on hemihypertrophy is at www.hemisupport.com Hemhypertrophy does increase some cancer risk and we follow the protocols for screening for these. It involves a blood draw each 6 weeks to monitor the AFP levels, which increase when these cancers are present. They also do a renal ultrasound each 3 months to watch for abnormalities on the liver and kidneys, where these cancers form. Early detection in these cases has resulted in a 95% succuss rate in curing these. Just something to consider.

There are several of us from the U.S. that use this site as well as a Yahoo CMTC support site that we started to find and point people to Lex that are only doing yahoo groups searches for answers on CMTC and Hemihypertrophy. Please stop by anytime and give the group a shout. We have a few parents from Virginia and Canada and now Kenya that answer most new posters to the site. This site is at http://health.groups.yahoo.com/group/VanLohuizenSyndromeCMTC/

We also have a web site for our grand daughter Ellayna that follows her journey with CMTC which is at http://www.gallisministries.truepath.com/ellayna.html

I hope some of this information has helped and feel free to drop me a note anytime.

Ed Gallis
(Grandpa Ed)

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