Anyone have any advice about CIP?(Congenital Insensitivity to Pain)
I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does anyone have any suggestions on support groups, doctors who are aware of rare diseases, or other info that might help him cope? He has done extremely well in the 62 years he has lived with CIP, but is becoming discouraged because of a lack of medical support. His GP, who was wonderful, and who worked diligently, to keep him healthy, has retired. Any help out there?
I might have some off handed help. I do also have a rare disease (Myasthenia Gravis) , but for many years I worked as a RN for the Shriners Hospital for Children and we had a number of patients with CIP and do understand the disease. I do not know where you live, but there are Shriners Hospitals in all of North America. If you contact one of them they have information on which practitioners in your area that treat adults with CIP as they do not treat anyone over the age of 21. It is a horrible disease and I wish I could help more.
, thank you so much for sharing that useful information. From what I saw, it is not information that is readily available. - Warmy, and with gratitude, Donna (Team Member)
Hi
, just check back with you to see how you and your loved one are doing. Have you been able to get the information you need to care for him in a way that makes you comfortable? - Warmly, Donna (Team Member) , you can try raredisease.org, they have some information here: bit.ly/3UNFnZw. I hope that helps! - Warmly, Donna (team member)
