Living with a rare disease does not only lead to psychological consequences (such as bad self-image and self-confidence), but also to psychosocial consequences (such as trouble in class, with friends and in sports),
Our organisation supports the idea of treating patients in a holistic way: body, feelings and mind. These three factors affect one another. When you don’t feel well physically, your mood is also affected.
When a young child has a rare disease, there are consequences for the entire family: parents, siblings, grandparents, etc. Unfortunately, it’s not just relatives who experience these consequences. Children and/or parents are also approached on the street, especially if the disease is visible. However, even if the disease is not visible, people can still ask questions if any disability is shown. In short: people can always stare at you or ask questions.
Children can be ignored, avoided, favoured, neglected or treated in a special way. If a child has a physical disability, this can limit any activities for their siblings. How do they feel about this and how do they deal with it? This can lead to a change in the behaviour of anyone involved.
CMTC is recognisable by bruises on the skin. From my own experience, I know that these might lead to accusations of abuse. This happened to me once in the emergency department, when very critical questions regarding our child’s bruises were fired at us.
Parents often fear in advance that their child might get bullied. As parents, it’s crucial to know whether a child’s issue is the parents’ problem or the child’s problem. Children start developing feelings of shame and shyness when they are around five years old. We frequently receive questions about laser treatment in visible areas. The question whether the problem is the parents’ or the child’s, very much applies here. We published a number of articles regarding laser treatment on our website
Parents also often asked us ‘’what did we do wrong?’’ That’s an understandable question. The answer is very simple though: nothing! Getting CMTC is sheer bad luck. Many people have some kind of ‘defect’, as Prof dr. Maurice van Steensel noticed. Bad eyesight is also a ‘defect’, but wearing glasses is common, while with CMTC that defect is somewhere else in the DNA.
Due to an uncertain future, possible treatments, causes, complications, other people’s comments, unwanted advice etc. parents can easily feel insecure. How can parents and caregivers deal with this?
- Reliable information. You can find loads of information on the internet, but is it reliable? Does the caregiver have any information available (e.g. PubMed)?
- Repeating information. As a parent, the first time hearing your child’s diagnosis can feel like a punch to the face. Because of this, you can process only a small portion of the information.
- As a caregiver, provide information in small doses and check whether the parents understand.
- Appoint one single supervising caregiver. This could be the family doctor, for example.
- Make sure that all medical data is in one place so you can determine who has access to which data. This development is currently happening in many countries. Best Patients know best is a possibility.
- Look for peer contact, through a patient organisation, for example. It can be a relief to meet people who recognise and understand situations and want to share their knowledge and experiences.
- Consider arranging psychological help.
Below you will find several possibilities how people involved in patient care could deal with this.
- Inform the child when something changes at school, in the sports club, etc. This can help reduce the child’s stress.
- Inform school directors, sports club and other parents of the disease in advance. Also, make sure to communicate what the child CAN do.
- Try to find activities where the child can easily keep up. You want to avoid the child feeling frustrated because they’re always on the sidelines.
- Talk to the child about the way people react to them. Ask your child to openly tell you about things that happen when you’re not around. Some children automatically share what happens at school, but some don’t. Teach your child to react to this in a positive way. An example of a Dutch girl who says: I have a magic leg that changes colour.
Children from 12 years old
- Learn about your disease.
- Find peers and talk to them. Ask them how they live with their disease.
- At this age, kids can help think about possible treatments. What do YOU want? It’s about YOU! What are the advantages and disadvantages of certain treatments? What happens if you do nothing?
Health care professionals
- Provide the family with as many details as possible about any diagnoses. If there’s no diagnosis, tell them which further steps can be taken.
- Try to eliminate uncertainties as much as possible.
- Check whether the patient or parents received the message well.
- Help them find more information, patient organisations for people with the same diagnosis, websites etc.
- If possible, talk to the child directly and communicate with them.
- Adjust the treatment to their needs. Treating a patient who has a rare disease is an ever-changing process.
- Offer a second opinion before parents/children make major decisions.