Every time I meet a parent whose child has Ehlers-Danlos they tell me how many years and doctors it took to finally get a diagnosis. This condition is not widely known or understood just yet.
Armed with the right resources each of us can help educate doctors about the care of children with Ehlers-Danlos.
The Ehlers-Danlos National Foundation have published an excellent checklist of things that you might want to get your child checked for.
This is prepared in a PDF so it is easily printed out. Ehlers-Danlos Pediatric Summary.
By sharing this information with your doctor you are helping spread the word about Ehlers-Danlos. This may help in the early diagnosis of other children in the future.
Firstly, thank you for all your hard work and support over the years.
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