Possible complications
On itself CMTC is a very mild affection. However at a certain number of people with the affection it is described that there are associate affections. The percentage of people with CMTC with these associate affections, varies largely in literature. There are many associate affections at CMTC. Of a lot of these affections is absolutely not sure whether there is a connection between CMTC and the associate affection.
At a number of people with CMTC also other skin symptom appear other than the marbling of the skin. A nasty by-product is that sometimes sores could appear and that the skin can be 'thin' locally. This is called 'atrofy'. Another sometimes appearing disorder is the asymmetric body parts. Body parts can be basic thinner (hypotrofy) but sometimes also thicker (hypertrofy).
Looking at our members we see a large variation in complications. Some 'only have' a visible marbled skin while others have serious complications. Right now we have two members in various countries having about the same complications (a very large head). In general we see asymmetric body parts when these parts have CMTC stains.
At this moment we know of 5 young patients who died due to very severe complications in several countries.
Look at out photo gallery where the asymetric body parts is shown well.
We also have a member that is (looking vertically) split in two parts, one half is affected by CMTC and the other half isn't. Complications in this particular case are e.g. a bad set of teeth and bad visibility on the affected side of the body.
When CMTC stains are on the head and especially in the face, then it is recommendable to contact an eye doctor who examines the patient on glaucoma (enlarged eyeball pressure). Visiting a child neurologist in certain cases is also advised.
Our experience is that extremely few doctors worldwide know about and recognize CMTC. An important activity that we do as a union is to enlarge the reputation of CMTC. The Internet is an important media we use besides directly contacting doctors.
In the Netherlands we have a direct contact with several medical specialists in among others academic hospitals and we keep these doctors informed about various developments around CMTC. We try to function as a 'spider in a worldwide web' by bringing doctors into contact with each other. An example of this is a Canadian doctor who did tissue research at a CMTC patient, who was brought into contact with a dutch doctor who also did a tissue research.
On itself CMTC is a very mild affection. However at a certain number of people with the affection it is described that there are associate affections. The percentage of people with CMTC with these associate affections, varies largely in literature. There are many associate affections at CMTC. Of a lot of these affections is absolutely not sure whether there is a connection between CMTC and the associate affection.
At a number of people with CMTC also other skin symptom appear other than the marbling of the skin. A nasty by-product is that sometimes sores could appear and that the skin can be 'thin' locally. This is called 'atrofy'. Another sometimes appearing disorder is the asymmetric body parts. Body parts can be basic thinner (hypotrofy) but sometimes also thicker (hypertrofy).
Looking at our members we see a large variation in complications. Some 'only have' a visible marbled skin while others have serious complications. Right now we have two members in various countries having about the same complications (a very large head). In general we see asymmetric body parts when these parts have CMTC stains.
At this moment we know of 5 young patients who died due to very severe complications in several countries.
Look at out photo gallery where the asymetric body parts is shown well.
We also have a member that is (looking vertically) split in two parts, one half is affected by CMTC and the other half isn't. Complications in this particular case are e.g. a bad set of teeth and bad visibility on the affected side of the body.
When CMTC stains are on the head and especially in the face, then it is recommendable to contact an eye doctor who examines the patient on glaucoma (enlarged eyeball pressure). Visiting a child neurologist in certain cases is also advised.
Our experience is that extremely few doctors worldwide know about and recognize CMTC. An important activity that we do as a union is to enlarge the reputation of CMTC. The Internet is an important media we use besides directly contacting doctors.
In the Netherlands we have a direct contact with several medical specialists in among others academic hospitals and we keep these doctors informed about various developments around CMTC. We try to function as a 'spider in a worldwide web' by bringing doctors into contact with each other. An example of this is a Canadian doctor who did tissue research at a CMTC patient, who was brought into contact with a dutch doctor who also did a tissue research.
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