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The Effects of FCAS on Everyday Life

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It can be difficult for people who do not have any subtype of Cryopyrin-Associated Periodic Syndromes (CAPS), including Familial Cold Autoinflammatory Syndrome (FCAS), to understand how this genetic disease affects people. It’s important for other people to know that CAPS can have a major impact on patients’ activities, social lives, family relationships, and work.

Thirty people with FCAS volunteered to answer questions about how symptoms of their genetic disorder disrupted their everyday lives. Of the 30 participants, 23 were women, and the average age was 50 years. Here is what they shared:

  • 95% said they have had to give up spending time outside
  • 83% said they have had to cancel plans with friends and family
  • 78% said that it was difficult to manage symptoms while working
  • 37% said they have had to leave their jobs