When it comes to autoinflammatory conditions, like CAPS, there is no one size fits all approach.
There are a lot of variables–that’s what makes these conditions so difficult to diagnosis, but also difficult to treat. While the goal of treatment is to be as pain-free as possible, not everyone has the same level of pain.
Back in the day (which unfortunately wasn’t that long ago), doctors thought familial cold autoinflammatory syndrome (FCAS), Muckle-Wells syndrome (MWS), and neonatal-onset multisystem inflammatory disease (NOMID) were all separate conditions.
However, advances in genetics located a specific gene mutation that is common in all three of these conditions: NLRP3 (CIAS1).
That’s how researchers realized that MWS, FCAS, and NOMID are all cryopyrin-associated periodic syndromes (CAPS). But they do vary in terms of pain and severity.
All of these forms of CAPS have common symptoms:
- joint pain
- periodic fevers
- general malaise
In order of increasing severity, these CAPS conditions are:
Now, this isn’t to say that people who live with FCAS have it easy or have nothing to complain about. Many people don’t fit entirely into one condition and may have some symptoms that overlap with the conditions on either side of them on the CAPS spectrum.
Plus, almost all autoinflammatory conditions, like CAPS, operate in periods of increased symptoms commonly called flares. Flare are no fun for anyone, and it doesn’t matter which condition you have. Flares are the worst. Every symptom is incredibly heightened, and unfortunately it isn’t uncommon for people to end up on rounds of steroids or having a stay in the hospital.
The Autoinflammatory Alliance has some fantastic information to help you figure out where you, or someone you love, fall on the CAPS spectrum.
They even have this incredible chart that really lays out the similarities and differences with a number of autoinflammatory conditions!