Download Talking to Your Doctor – Discussion Guide

Talking to Your Doctor – Discussion Guide
Start a Conversation About Cryopyrin-Associated Periodic Syndromes (CAPS)
Familial cold autoinflammatory syndrome (FCAS) and Muckle‐Wells syndrome (MWS) are 2 conditions in
a group of rare diseases called CAPS.
 Although CAPS are estimated to affect about one in one million people worldwide, experts
believe that not all patients with CAPS have been diagnosed yet because of poor disease
recognition
Because CAPS are such rare diseases, many doctors have not seen a patient with these conditions.
 Symptoms may resemble other diseases; however, in CAPS, symptoms are chronic in nature and
keep coming back
 CAPS are genetic diseases, which mean they can occur spontaneously at birth or they can run in
families. Sometimes, the gene for CAPS can be traced back many generations. It can be helpful
to think back through your family history, or to discuss it with family members to see if other
relatives experienced similar symptoms throughout their lives
If you answer “yes” to the following 3 questions below, you may be suffering from CAPS. Treatment may
be able to help relieve the symptoms of CAPS, but first you must be diagnosed by your doctor.
1. Do you experience both of these symptoms on a regular basis or in response to changes in
temperature or environment?
 Rash on an ongoing basis
 Fever or chills on an ongoing basis
2. In addition to ongoing rash and/or fever/chills, do you frequently have 1 or more of the following?
 Headache or migraine
 Fatigue (tiredness)
 Sore or red eyes
 Muscle or joint pain
3. Has any family member reported similar symptoms or received a diagnosis of CAPS?
Only a physician can determine whether you or your loved one has CAPS, so be sure to discuss all
symptoms with your doctor.
Print this document and bring it with you to the physician’s office to help remember the symptoms and
details of your family history that you want to discuss.
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