"personalized guidance with exceptional compassion"
As a young teenager, my child Norah was diagnosed with a connective tissue disorder, Ehlers Danlos Syndrome, that causes chronic pain, difficulty eating, and a variety of other symptoms that made it extremely difficult to participate in school and other activities. This is a condition many doctors aren’t familiar with and I soon discovered that our health care system does a poor job supporting patients and families with these kinds of multi-faceted conditions. We saw many doctors for individual symptoms but no one who could treat the whole picture. As a parent, it was really challenging to coordinate Norah’s care and also take on reading medical research to learn more about the condition and treatments that might help. It was especially painful to see Norah grow more and more convinced that there was nothing that could be done and the pain would never stop.
All that changed when we connected with the Center for Patient Partnerships. From the very first conversation, the advocates we’ve worked with have taken the time to understand how Norah’s illness is affecting all aspects of life and to provide personalized guidance with exceptional compassion. Their encouragement gave us the hope that things could get better and the strength to keep going.
With CPP’s help, we were able to enroll in a clinical trial run by a leading specialist in Norah’s condition. Norah’s symptoms have improved and more importantly, we now have a better understanding of the cause and what else can be done to help. CPP has also provided expert advice as we have worked to meet health insurance requirements to get needed care.
Thanks to CPP’s support, Norah has graduated high school and is now starting college with the goal of becoming an occupational therapy assistant to help other kids dealing with complex conditions. Words cannot express how grateful we are to everyone at CPP – they are truly a lifeline for patients and families.
Meredith M.
Madison, WI