Psychological aspects of patients with Conspicuous External Features (CEF)

As children are born with skin and/or physical problems, such as that at CMTC is the case, we speak of Conspicuous External Features (CEF). Its divisiveness prevents this that there are all kinds of names are used which indicate the ' deviant ' or ' abnormal ' at CMTC sufferers such as English bv the word ' disfigurement ' either ' facial disfigurement ' or ' mutilation ' that sounds quite discriminatory. In that respect, they now use the word ' difference ', ' difference ', compared to others. At a ' deviant ' or ' abnormal ' appearance is often the link is made with a ' different ' psychological state. People in wheelchairs have the experience now and then to be called upon as a child or as being different.

This brings me to a completely different point, nl. that society generally expects that patients have to adapt to society instead of asking the question how society can facilitate that adjustment. People with OCHOLA generally have from a lowered self-esteem tend to meet the expectations of society by being a kind. While it is the only way to be different to deal with and confidence, to enter and not to meet an image of perfection that is imposed by the society. I think the CMTC-patient association can play an important supportive role in here.

With regard to the feeling a striking look, there is something remarkable going on. You would suspect that there is a one-to-one relationship between the size of a prominent feature and the lijdensdruk thereof. That turns out not to be the case. At one extreme, there are people who suffer from a supposed ' deviation ' which in reality little or no detectable but that they do so. They have bv. the feeling that their one cheek is thinner than the other or that their nose much too large or that a barely visible Speck threatens their existence. The image is known as ' Body Dysmorphic Disorder (BDD) '. With us it is known as ' Imagined Ugliness ', a body dysmorphic disorder with serious consequences. Dissatisfaction with the own appearance is common. However, sometimes shooting pretty by and people get obsessed with body parts that they find ugly. Experts estimate that in the Western world now even one in a hundred people suffers from some form of Imagined ugliness. Assurances by the environment also ineffective. The obsession with their appearance puts a lot of claim on their lives and that of their family, a body dysmorphic disorder with serious consequences.
At the other extreme, there are people who have an irresistible urge to healthy limbs to amputate. They consider it to amputate part as a defect or a defect, as something that is not in their. This is known as ' Amputee Identity Disorder ' or ' Amputation fetish '. The paradox is that they are complete only feel like a body part is taken away and so not be complete. I just want to show how careful one must deal with complaints about external features and how each one his complaint on a subjective, personal way that one should take seriously. Furthermore, one must look at all that these complaints at CMTC patients now can play an important if not dominant role once and since no effective treatment exists for most features, we will have to look into the extent to which opinions may play a role in the guidance of CMTC patients.

One can then think of a number of key stages in the life of the patient and the parents, such as:

  1. The first weeks and months after birth.
  2. Learn how to deal with other people's comments on the State of the child.
  3. Learn to communicate on the State of the child.
  4. Help with problems that the child may get it go to school and make friends.
  5. Social interactions.

In addition, the following topics:

  1. Medical supervision.
  2. Reactions of a CMTC patient.
  3. Practical psychological tips.

Thanks to Dr. Wouter van der Schaar, medical psychologist (also his only suggestions taken over by ' changing faces ').