UNDIAGNOSED

What about the Undiagnosed?

Some conditions or disorders are hard to diagnose, and there are several reasons why. Many conditions have similar symptoms. Some children have a number of problems that do not fit into one specific disorder. There are substantial variations in the degree to which a child might be affected by a disorder or syndrome. Certain symptoms or identifying features may not appear until later in the child’s development (which can lead to a change in the original diagnosis). Very rare conditions are difficult to identify, and new syndromes are being identified all the time.

If your child has an undiagnosed disability, it’s natural to feel like you’re in limbo, and to get frustrated at being referred from one specialist to another. It’s hard enough to find ways around the healthcare system to access information, help and support with a diagnosed syndrome. Without a diagnosis, the system can be unnavigable, and parents often worry that if their child has no “label,” they will be deprived of appropriate services.

It’s important not to get discouraged as you start the journey of discovery. For many parents the best support comes from other parents in local multi-disability groups that typically represent a range of physical and learning disabilities, some with labels and some without.

 

Undiagnosed Resources

Syndromes Without A Name USA (SWAN USA) http://www.undiagnosed-usa.org/is a non-profit tax exempt organization that offers support, information and advice to families of children living with a syndrome without a name. They are often described in many different ways such as: undiagnosed syndrome, unknown diagnosis, and mystery diagnosis.