Do you need help?
Jesteś pierwszy raz na tej stronie? Czy informacja o CdLS u Twojego dziecka jest dla Ciebie przytłaczająca? W takim razie zacznij od początku i pozwól, że przedstawimy Ci CdLS krok po kroku.
Oto jesteś tu i teraz - lekarz właśnie powiedział Ci, że Twoje dziecko ma zespół Cornelii de Lange (CdLS), a Ty nigdy o nim nie słyszałeś.
Co to oznacza dla mojego dziecka? Jak długo będzie żyło? Czy będzie potrzebowało opieki przez całe życie, czy są jakieś postępy medyczne, aby usunąć ten syndrom? Czy moje dziecko będzie mogło chodzić do szkoły, wyjść za mąż lub mieć dzieci? A jak to się stało?
Na tej stronie znajdziesz zwięzłe informacje o CdLS. Jest ona przemyślana, czytelna i a użyty język niezbyt naukowy. Nie tylko przeczytasz o problemach, ale i rozwiązaniach. Pokażemy Ci, że Twoje dziecko może mieć wspaniałe życie. A jeśli nadal masz wątpliwości, spójrz na piękne zdjęcia.
Witamy w świecie CdLS
Możemy sobie wyobrazić, że masz teraz wiele pytań. Na tej stronie znajdziesz informacje o CdLS oraz doświadczenia, pytania i wskazówki od członków społeczności.
Być może masz już wiedzę na temat zespołu Cornelii de Lange (CdLS) i szukasz informacji na konkretny temat. Może chciałbyś pogłębić swoją wiedzę na temat tego zaburzenia lub podzielić się swoim doświadczeniem. Jeśli tak, nie wahaj się z nami skontaktować.
Rodziny na całym świecie i eksperci ds. CdLS zbierali informacje, doświadczenia i pytania przez ponad 15 lat, aby zapewnić Ci pomoc. Ta strona internetowa jest najobszerniejszą bazą danych zawierającą zrozumiałe informacje na temat CdLS, jaką znajdziesz, liczącą ponad 1500 stron. Jest dużo do przeczytania; nie spiesz się.
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
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:
- Information provided by top experts
- Stories shared by families
- Frequently asked questions (you can also get here from the home menu: ask the expert)
- Parent Questionnaires, which we continue to use to learn together.
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:
- The communities behind this website can help you (scroll down to find a group closest to you).
- The CdLS Federation would like to introduce itself.
- Join private Facebook groups. Several private CdLS Facebook groups are open to family members to join.
- Meet the Cornelia de Lange Syndrome Expertise Centre. Choose the organizations with a flag that you like.
- View our network of experts. Choose the people marked with a flag that you like.
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:
- All activities on the event calendar (worldwide, earliest first). Use the filters on this page to only view events closest to you.
- World Conferences can also be found via the button world conference.
- Surf the group nearest to you (homepage -> the map) and click on their events
- Surf the group nearest to you (homepage -> the map), and click on their website to find out what's being organized.
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.
