Learning that your child has a disability can be a traumatic experience for many families. You will probably have questions about what their disability means and the impact it will have on your child and your family. You may also want more information about why your child has a disability but finding your way around medical information can be difficult.
Information on your child's condition
Contact a Family can provide information on your child's disability. Our directory has information on over 1000 conditions. If you cannot find a specific condition in our directory, we also have information on more conditions our database. We also produce information to help you decide
Finding medical information on the internet
Families with a child who has a disability or health condition often use the internet to search for information and support. Whilst the internet can be a useful source of information, the large amounts and types of websites available can be confusing and it's important to be able to judge if the website provides relevant, quality information. Contact a Family can help with this.
A genetic condition in the family
When you or a member of your family are first told that your child might have a genetic condition you may feel shocked, very upset, or just numb. Perhaps this news confirms what you have suspected for some time. Your doctor may have suggested genetic counselling to you. Many people are not sure what genetic counselling involves, however, or what to expect from a genetics appointment. Furthermore, many people may want to know how a condition arose in the family and whose side of the family it came from. These unanswered questions may cause tensions within a family and generate feelings of anxiety.
Living without a diagnosis
You may find yourself caring for a child who does not currently have a diagnosis. There are many other families in a similar situation, all searching for information that will help them understand their child's particular symptoms and needs and ensure that they receive the help, support and services they need.
It is natural to want to know the cause of your child's disability. Without a clear diagnosis you can feel in limbo, trying to come to terms with what is happening and unsure what the future holds for your child and the rest of the family. There are no easy solutions and although some families receive a diagnosis at a later stage, for others, sadly, this does not happen.
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