CAPS - About

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CAPS stands for Cryopyrin-Associated Periodic Syndromes. It is the name given to a group of 3 different diseases.

These 3 diseases are:

FCAS, which stands for Familial Cold Autoinflammatory Syndrome
MWS, which stands for Muckle-Wells Syndrome
NOMID/CINCA, which stands for Neonatal-Onset Multisystem Inflammatory Disease, also known as Chronic Infantile Neurological Cutaneous Articular Syndrome

Why Haven't I Heard of CAPS?
CAPS is rare. Fewer than 1000 cases of CAPS have been reported in the world, but more than 5500 people may actually have CAPS and not know it. Because CAPS is so rare, most doctors will not have seen a patient with CAPS.

Milder symptoms, such as headache and fever, can appear to be due to other things. It can take some time before a doctor begins to think about CAPS because it is not something he or she sees every day.

Even those who have milder symptoms of CAPS may think their symptoms are due to the flu. So, they may not visit the doctor to ask about these symptoms.

If you think you have CAPS, you can use the information on CAPS Family Network or print this booklet to help you remember the symptoms you want to talk to your doctor about.

It is important to be diagnosed and get treatment from your doctor. Treatment can help relieve symptoms and, in some cases, may eliminate them.

What is CAPS?

CAPS is a group of rare inflammatory diseases. Fewer than 1,000 cases of CAPS have been reported in the world, but more than 5,500 people may actually have CAPS and not know it.

How Does Someone Get CAPS?
CAPS is usually passed on from one parent to the child through the genes. So, it is likely that someone who has CAPS got it from a parent.

Just because someone in your family has CAPS doesn't mean that you do too.

Some people can have CAPS without anyone else in their family having it. However, for most, CAPS can be traced back in their family for many generations.

If someone in your family has CAPS, you should talk to your doctor.

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