Information

Do you need help?


Are you new here? Do you find it overwhelming? Then start at the beginning, and let us introduce you to CdLS step by step.


There you are. A doctor has just told you that your child has Cornelia de Lange Syndrome (CdLS), and you have never heard of it.

What does it mean for my child? How long will they live? Will they need life-long care, is there any medical advances to remove the syndrome? Will my child be able to go to school, get married, or have children? And how did this happen?

On this page, you will find concise information about CdLS. It is well thought out, readable, and not too technical. You will not only read about the problems but about the solutions. We will show you that your child can have a wonderful life. And if you still have doubts, look at the beautiful photos.

A child with Cornelia de Lange Syndrome is a child to love!
Em. prof. Dr. Raoul C.M. Hennekam
pediatrician/clinical geneticist

Welcome to the world of CdLS

We can imagine that you have many questions right now. On this website, you will find information about CdLS. You will also discover experiences, questions, and tips from community members.

You may already be educated about Cornelia de Lange Syndrome (CdLS) and are looking for information on a specific subject. Maybe you would like to deepen your knowledge of this disorder or share your experience. If so, don't hesitate to get in touch with us.

Families worldwide and experts on CdLS collected information, experiences, and questions for more than 15 years to provide you with resources to help. This website is the most extensive database with understandable information about CdLS you will find, with more than 1,500 pages. Plenty to read; take your time. 

The essentials are below

How parents deal with the initial shock is very personal. You may feel powerless and sad because your child is different from what you expected. Some parents prefer to be alone, while others want to talk about it, and still, others want to know everything there is to know about the syndrome.

Impact on your relationship
A child with a disability can bring you closer together as parents. You share the disappointment and the grief. You feel responsible for your child and each other. There may be additional stress in your relationship because it can be difficult to support one another.
Siblings
Siblings may handle a variety of emotions. They may feel sadness or fear and sense the tension felt by the parents. It is helpful to explain what is going on appropriately for the siblings' ages. Try to do this as soon as you think it is correct. Preferably don't say the child is 'sick' because sick children get better. Young children can also associate "sick" with when they aren't feeling well and are afraid of "catching" what their sibling has.

A child with CdLS demands a lot of time, attention and energy. You will visit the hospital regularly because your child needs extra care. It will take some time before everything goes back to normal. That is not surprising. Your life has been shaken up. You need time to find your feet again.

It is good to make those around you aware of what Cornelia de Lange syndrome entails. Our community can help you with this. On this website, you will find a lot of information, useful addresses and practical tips. You will also find other parents here - benefit from their knowledge and experience!

 

The daily care of a child with CdLS and the stress of doctor visits demand a lot from parents. Everything takes more time and energy. You will notice that.

However, making time for each other, or spending time alone or doing something with the other children, is essential.

Strategy for self-care
  • Acknowledge your sadness. Acknowledging your feelings is necessary to cope with them.
  • Be aware of your body. Get enough sleep and find ways to relax.
  • Take care of your relationship and your family. Make time for yourself and your partner and discuss your needs with each other.
  • Asking for help is difficult. But you don't have to do everything alone. Try to find out what kind of help is most useful for you and learn what resources are available in your area.
  • Seek help for yourself. It may help to talk to a therapist who can guide you in your role as a parent of a care-intensive child.

 

Cornelia de Lange Syndrome (CdLS) is a rare congenital disorder. There are several features by which you can recognize CdLS:

  • The child is smaller and (sometimes much) lighter than average.
  • The child often has long eyelashes, eyebrows, and a short nose.
  • Sometimes there are abnormalities in the arm, hand, or fingers.
  • The child is usually very hairy, especially on the back.
What does this diagnosis mean?
 

Children with CdLS are different from other children. They are more likely to have gastrointestinal (GI) problems, called esophageal reflux. Almost all children with CdLS have this problem. Always ask your doctor to look at this.

Children with CdLS develop more slowly than their peers and usually have a cognitive disability. In addition, they often have difficulty communicating.

Everything will be different, but how different? There is little to say for sure about this. You will have to wait and see. In the meantime, try to enjoy your sweet, unique child.

 


How to get around this website

websiteNavigation

Here we explain how to find your way around this site

You can navigate this website in multiple ways. Depending on your device, there is a menu button at the top or bottom of the screen. There are also blocks you can use on the homepage. Via 'About CdLS' in the menu, you quickly surf to:

If you want information on a specific topic, you can easily find it by typing your search term into the search bar on the homepage. You can also use the search bars on 'Information,' 'Stories of experience,' and 'Ask our Experts.'

The articles in the library are easy to find through our innovative storage structure. All information is marked with one or more topics. Want to know how this works? Then click here.

 

There are different options to find help. You can use the 'meet us' button on the main menu bar; the 'meeting others' block, or 'the map' on the home page. You quickly surf to:

Click 'Stories and News' or the blocks on the homepage, 'Share your story and discover ours!' or the map;

  • Check the group nearest to you if their website has a 'news channel' (homepage -> the map -> your national group -> website).
  • Read the latest news from the Federation.
  • Follow the social media pages related to the group nearest to you (homepage -> the map -> your national group -> social media).

Click 'Events' or the block on the homepage 'Meet each other' you can quickly surf to:

You can!

Our communities are for and from parents, family, friends, interested parties, and supporters of someone with Cornelia de Lange Syndrome.

Join a community
 
As a member, you will be invited to meetings and study events where you can learn more about the syndrome. Maybe you will receive newsletters about CdLS, and you will be able to connect with others around CdLS in private communities. In addition, you could receive books or other material with lots of information and heartwarming stories of other parents.
 
How to join
 
Surf to our homepage -> Scroll down to the Map and click the group nearest to you.
You might be able to join them from that page directly, or you will find a link to their website that will guide you further.

Do you want more personal information or to share something?

Register
 

If you want (and are ready), you can register on this website. You can then actively participate by asking a question of your own, sharing your story, talking in our theme rooms, or learning more about CdLS by filling in our questionnaires.

Other families and professionals have complied with much of what you find here. Add your piece of this treasure trove of information too!

Your community's website
 
Surf the website (or social media) of the community nearest to you to find out about participation options.


About the website contents

All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: info@cdlsWorld.org