Publications to support people

The Cornelia de Lange Syndrome (CdLS) is characterised by various physical, cognitive and medical problems. 

Nevertheless, we would like to inform you about our condition from a positive perspective (positive health). This means that we believe that a good quality of life is possible and that you can also see (and enjoy) what can be done next to the problems and challenges that remain.

So how can we help you make the most of your child's, brother's, sister's or client's life and make sure it's going well for you too?

Basic Principles Positive Health:

People are not their condition. Nevertheless, we usually focus on this. All attention is paid to their complaints and health problems, and how we can tackle them. Positive Health takes a different approach. The emphasis is not on disease; but rather on people themselves, on their resilience and on what makes their lives meaningful.

• We will inform you soberly about the possible problems;
• We give you the best available information, based on international consensus and scientifically acknowledged documents; 
• We tell you what you can do yourself;
• We will tell you about the possibilities for treatment, therapy or care;
• We illustrate as much as possible with experiences of other families, so that you can see what power there is in our community;
• We show you the questions asked with the answers given; 
• We also celebrate the successes.
   

From the positive health approach, six dimensions are central that influence your happiness.

The six dimensions are:

• The body
• daily life
• Participating
• enjoy yourself
• now and in the future
• Feelings and thoughts

Each dimension holds many topics and provides background information per topic, experiences of others, questions asked by parents / caregivers and answers from experts.

The six dimensions and their topics:

The body

• Genetics and diagnosis,
• Narcosis.
• Cardiology (Heart).
• Mouth and teeth.
• Eyes, Ears and Nose.
• Esophagus, stomach and intestine.
• Gynaecology.
• The immune system, susceptibility to infections.
• Functioning of the brain (Neurlogy).
• Sensitivity to sound, light, odor.
• Toileting.

Daily life

• Development and growth function.
• Food and drink.
• Healthy food.
• Orthopaedics (movement and walking).
• Communication and speech.
• Sleeping.
• Stimulate development (rehabilitation).
• Physiotherapy and Occupational Therapy.

Participation (Participation)

• Education.
• Leisure activities
• Participating in society>.
•  

Enjoy Yourself

• Travel.
• A pet as friend.
• Music.

Now and in the Future

• Living
  Daytime work and work
• transition from child to adult
• planning future

Feelings and Thoughts

• Family: happiness and grief
• Cognitive development
• Behavior

More information

• comprehensive guide to the diagnosis and management of CdLS.

Brochures

• GP Brochure (Netherlands)

Stakeholders

• Recommended reading for parents/caregivers:

• Caretakers of young persons with CdLS (< 5 years)
• Caretakers of persons with CdLS
• Caretakers of (young) adults with CdLS (>16 years)
• Grandparents, Aunts, Uncles,Friends ... of persons with CdLS