Rett Clinic is looking for older Rett patients

This is a request submitted by the Rett Clinic at Children’s Hospital Colorado

 

As a clinic we are hoping to reach out to the older population of those diagnosed with Rett, CDKL5  and other Rett-like disorders.

First, we would like to make sure to invite you to attend our Rett Clinic – we hope to see patients of all ages for their whole life.  New patients for the Rett Clinic do not mean a new diagnosis! We have had the chance to see some wonderful patients in their 20’s, 30’s, 40’s and 50’s and would love to continue to see more and more patients that are on the older side. If you know of any families who haven’t attended the clinic yet and live locally – please reach out and encourage them to attend and contact us. We would also encourage them (and all families of all ages) to also to get enrolled in the Natural History Study as well to contribute to the study and help widen the data range.  The more data we can contribute the better our research and information we can have on these disorders for everyone to look at over time.

 

We are also really trying to be a better resource to our families as our patients age and in order to do that we need those families with older children to help guide us. If you have had your child in any of the following and have any input for us (the good, the bad or anything at all) please email us your input:

  • local day programs
  • local neurologists and primary care providers that are good for older patients with disabilities
  • local care facilities for aging adults (either ones you do recommend or don’t recommend)

Honestly we will take any guidance you have as we start to create a reference booklet for those patients that are aging and needing guidance on a new world outside of Children’s Hospital. Or if you have any other information you think we would find helpful, please feel free to reach out with that information.

 

To contribute to our Adult Reference Booklet or schedule a clinic appointment please email rettclinic@childrenscolorado.org  or call 720-777-4363

To schedule an appointment in the Natural History Study please call Gina at 720-777-5514.

 

Thank you

Dr Tim Benke and Tristen Dinkel, RN  – Rett Clinic at Children’s Hospital Colorado