• Mission
  • Activities
  • Member meeting NL
  • Family day
  • Children's website
Mission

CMTC OVM Mission

"Our activities are aimed at the well-being of people who suffer from vascular malformations like CMTC ('Van Lohuizen syndrome') and to stimulate the scientific research of these afflictions."

CMTC Efteling 20090613 007

CMTC activities

An example of the many activities which we are performing. With special thanks to Mark Knopfler (Dire Straits) for allowing the use of his music.

Member Meeting NL

Member meeting NL 2015

Our global member meeting was held on the 14th of November 2015 in the Netherlands.
A total of 126 people from 10 countries was present.

Read more

Family day 2015 (Efteling)

On Saturday the 27th of June we organised the Dutch CMTC-OVM family day again! This year we had chosen the Efteling!
It was perfect in all aspects!

Read more

jezz

Youth Education Rare Diseases

This is a special website for children in the age around 10-15 years. Here you can travel through a number of worlds together with Amy and Max!

 

Register as member

Can an infusion be applied or an injection be given in for example an arm or a leg that is affected by CMTC?
This is not recommended due to the chance of thrombosis (clotting in the bloodstream which could cause a stroke or heart attack for example).

We have a child with CMTC and would like another child. How great is the chance that we will have another child with CMTC?
The chance of having a second child with CMTC is low. The same chance as for parents that have had children already without CMTC.

My child with CMTC has regular nosebleeds. Does this have anything to do with CMTC?
As far as is known, there is no relationship between CMTC and nosebleeds.

My child has a CMTC patch on her knee. If she falls on this patch and the wound bleeds then it appears to take a long time before the knee recovers. Is this normal?
This is normal.

My child with CMTC has marked red veins in her eye. Does this have any connection with CMTC? What is my best course of action?
Probably also a symptom or has nothing to do with it.

Should someone with CMTC patches be exposed to the sun?
This is generally not an issue if a good sun cream is used of at least factor 15.

My child with CMTC has very flexible joints. Does this have anything to do with CMTC? 
There is no known connection between CMTC and flexible joints (hyper mobility). Normally speaking, this hypermobility will reduce around 5 years after the end of the body’s growth stage.

My child with CMTC has two toes that have grown together. Does this have anything to do with CMTC?
This can occur when the child has CMTC patches on the legs and/or feet. We have several members who have two toes that have grown together.

As a woman with CMTC, should I use an anti-conception pill?
If you have varicose veins then there is a risk of thrombosis. Discuss this with your doctor.

I have CMTC and would like to become pregnant. What should I do?
There are no restrictions in the case of non-syndromal CMTC. 

I have CMTC and an asymmetric body in the height dimension. I also have scoliosis. Are these two conditions related?
This is possible but would mostly not be the case.

My child with CMTC has fingers that are growing bent. Does this have anything to do with CMTC?
No.

 

jezz

Upcoming Events

Nov
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0808:1111 01-11-2019 - 1010:1111 02-11-2019

Twitter

CMTC-OVM @PGOsupport Dank je! Ben weer in buitenland. Volgende week zal ik bellen.
Thursday, 22 August 2019 09:32
CMTC-OVM @PGOsupport Is het ook mogelijk deze cursus in gecomprimeerde vorm 1 op 1 te doen?
Thursday, 22 August 2019 08:55
CMTC-OVM Today we have met two families in Bratislava (Slovakia) for personal support. Answering lots of questions and con… https://t.co/eEVOR7ZGAu
Tuesday, 20 August 2019 21:14