Listen to me
Don’t be cynical, indifferent, or in a hurry.
Ask me what makes my problem better or worse.
Ask me what I think the cause is.
Ask me to look for clues and teach me what they are.
Think about me
Think of my problem when you read those books, journals, and atlases.
Think of my problem when you attend meetings.
Think of asking your colleagues about me.
Order specific tests to help you decide on my diagnosis and treatment.
Could I have AIDS, cancer, or lupus?
Do I need a biopsy?
A challenge with a medication?
Do I need hospital help?
Do I need to see a consultant?
Don’t give up on me
There is always one more treatment you can try.
Just imagine I have a different disease and treat me for that.
See me during an attack to get new ideas and new tests.
Ask me lots of questions during every visit.
I won’t give up on you, for I am an orphan
This was published in Consultations in Dermatology
Studies of Orphan and Unique Patients
Walter B and E. Dorinda Shelley
Cambridge University Press 2006