Organize information on/about CdLS
We have (too) many ways to organize information on CdLS.
In the many years we have collected and organized information on our syndrome we've seen many approaches to the same. This has helped our families and experts to achieve Wonderfull things.
But many years later we get reactions that it has become confusing; One of the things we have organized is to ask our valued SAC to relook at our international Guidelines, to get everybody on the same page again.
But maybe it is also good to look for a generic way to (re)organize our information.
It is good to (re)think about what we would like to achieve, below is a statement of the goal we would all like to achieve:
Our library about life with Cornelia de Lange syndrome
We try to inform you, as broadly as possible, about living with the Cornelia de Lange syndrome (CdLS)!
We are striving for positive Health, which means to look at at how to pursue the best possible quality of life (Happiness/Well being);
- It is our goal to put health of the human centrally, not the syndrome.
- You feel you are being approached in your energy, not in your weakness (What you can achieve, not in what you can not do)
- However your diagnose of CdLS there is a lot that is well (healthy). A lot of which will breng joy to the family and caretakers
This positive health can be improved.
Positive health has six dimensions;
- bodily functions,
- daily functioning,
- mental functions and perception,
- spiritual/existential dimension,
- social and societal participation,
- quality of life.
These 6 dimensions can be further described in topic's and will have a certain level of detail.
We think of level of detail as:
- introduction level,
- guidelines and opinions, enriched with experience stories (closer look) of families,
- questions to (a) expert.
- Going to Hospital: Anesthesia
- Behavior
- Cardiology (Heart)
- Dental
- Development
- Education
- Eyes, Ears and Nose
- Family and Emotional Issues
- Feeding and Gastroesophageal
- Genetics and Diagnosis
- Gynecology
- Immunodeficiency
- Neurology
- Nutrition
- Orthopaedics (Move and Walk)
- Sensory Issues
- Sleep
- Communication and Speech
- Therapies
- Transition to new or other living
