Do you have a medical condition that you think may be a rare disease? Have doctors not been able to explain what is wrong with you? Then remember to C.H.I.R.P. about it.
- Calm: Don’t panic! Stay as calm as possible to get through each day. Staying calm will also help you to remember all the things you will need to learn about the disease. Know that you are not alone. There are many people who understand the stress of facing the diagnosis of a rare disease.
- History: Be thorough and persistent! Leave no stone unturned when checking your family history for possible clues about your disease. Be persistent in making sure that your doctor has results of all the tests that you’ve already had done.
- Inquisitiveness: Ask questions! Even though your doctors may not have all the answers, keep asking questions. Your questions may give your doctor clues about the next steps to take to get a diagnosis and put you on your way to treatment.
- Resilience: Don’t take no for an answer! Keep telling your doctors about all the symptoms you are having. Keep a diary of your symptoms and of the questions you have asked and the answers you have received. Insist that your doctors read the diary.
- Patience: Be patient! It may take time for test results to come back. When you have a rare disease, the test results may be complicated and there may not be a treatment. But keep in mind that new therapeutics are being developed at unprecedented rates, thanks to the US Orphan Drug Act of 1983 and the FDA designations of fast track, breakthrough therapy, accelerated approval, and priority review, which allow for faster access to new therapies.
Patients’ voices grow stronger every day!
For additional information about Rare Diseases, please visit the following resources:
National Organization for Rare Disorders:
National Institutes of Health:
Undiagnosed Diseases Network:
Rare & Undiagnosed Network: