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CANADIAN CMTC FOUNDATION

In itself CMTC is a usually fairly mild condition. For some people with the disorder however, associated anomalies may occur. The percentage of people with CMTC where such abnormalities occur varies quite dramatically in the literature. There are many such instances mentioned in association with CMTC. It is not certain that there is a connection between CMTC and the associated issue.

For some people with CMTC there may also be other symptoms aside from marbling of the skin. A nasty side effect is that sometimes sores can occur and that the skin can become "thin". This is often referred to as "atrophy". Another uncommon abnormality is an asymmetry of the limbs. A limb can potentially be thinner (hypertrophy) or thicker (hypertrophy).

With regard to our members, we see a wide variation of complications. Some have "only" a visibly marbled skin while others exhibit serious complications. We now have two members in different countries with the same complications (a very large head). In general, we see asymmetry of limbs whenever CMTC stains are present.


At this time to the best of our knowledge five children in different countries have succumbed to very serious complications.
See the  'photo gallery' if you wish to see examples of limb asymmetry.

We also have a member whose body is virtually divided into two vertical halves: one half is afflicted with CMTC and the other half is not. Complications in this particular case include, e.g. bad teeth and poor visibility on the affected side.

Whenever CMTC stains are present on the head, and especially on the face, it is advisable to consult an ophthalmologist regarding the possibility of glaucoma (increased eye pressure). A visit to a pediatric neurologist in such cases is also recommended.

Our experience has shown that very few doctors worldwide know and recognize CMTC. An important activity that we as a society permanently undertake is to increase the awareness of CMTC. The Internet is an important tool that we use in addition to approaching physicians directly.

In the Netherlands we have direct contact with several medical specialists (several at teaching hospitals) and keep these doctors more aware of all developments CMTC. We try to operate as 'spider in a worldwide web', for example, by bringing physicians together. A concrete example is the Canadian physician who is performing tissue research of a CMTC patient being put in contact with a Dutch doctor who is doing similar research.