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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 Rubinstein-Taybi Syndrome (RTS), and you have never heard of it.
What does it mean for my child? 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 RTS. It is well thought out, readable, and not too complicated. 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.
Welcome to the world of RTS
We can imagine that you have many questions right now. On this website, you will find information about RTS. You will also discover experiences, questions, and tips from community members.
You may already be educated about Rubinstein-Taybi Syndrome (RTS) 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 RTS 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 RTS you will find. Plenty to read; take your time.
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 RTS 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 Rubinstein-Taybi 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 RTS 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.
Rubinstein-Taybi Syndrome (RTS) is a rare genetic disorder. There are several features by which you can recognize RTS:
- Intellectual Disability: Individuals with RTS typically have moderate to severe intellectual disability.
- Distinctive Facial Features: They may have distinct facial features, including a broad forehead, downward-slanting eyes, and a beaked nose.
- Broad Thumbs and Toes: Many people with RTS have broad thumbs and big toes.
- Growth Delays: RTS may lead to growth delays, both in height and weight.
- Behavioral and Social Challenges: Behavioral and social challenges, such as hyperactivity and difficulty with social interactions, can also be present in individuals with RTS.
- What does this diagnosis mean?
- Children with RTS are different from other children. It's important to note that RTS can vary in its severity and presentation among individuals.
- 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.
The Rubinstein-Taybi Foundation has a wonderful brochure, especially for families, with simple text like this page. It is an excellent introduction before you start studying on this website. It will also help you inform those close to you when they come to visit and ask questions.
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 RTS' 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; or 'the map' on the home page. Go directly to:
Through the menu 'News', you can quickly navigate to:
You can quickly navigate to the following via the menu 'Events' or the block on the homepage 'Meet Each Other':
You can!
The Supportgroup for this Rare Disease is for parents, family members, friends, interested individuals, and supporters of someone with a Rare Disease.
- Joining
- As a member, you will be invited to the annual family day and educational events where you can learn more about the syndrome. You will receive our glossy EnzovooRTS and connect with peers in our private community. Additionally, you will receive our brochure containing valuable information and heartwarming stories from other parents.
- How to Join
- Go to 'Meet us,' and at the bottom of this page, you will find the instructions; Join us...
- Register
- If you want to (and are ready), you can register yourself on this website. You can then actively participate by asking your own questions, sharing your story, engaging in discussions in our themed rooms, or learning more about RD by filling out our questionnaires. This way, much of what you find here has also been contributed by others; add your piece to this treasure trove of information!
- Our Facebook Group
- Visit the 'Meet us' page and click on the Facebook group link. The Facebook group is highly suitable for exploration. Others can share useful tips, and you can also share your own experiences.
The option above to 'register' provides you access to our experts, and the stories you share there may be included in the newsletter and added to the database so that others can benefit from them (cross-border).
