CAPS community

CAPS or Cryopyrin Associated Periodic Syndromes are a group of auto-inflammatory rare diseases (MWS, FCAS & NOMID). Below, you'll find testimonies of patients who live with them.

Living with FCAS

Written by Kimberly, published 7 months ago.

Kimberly, an FCAS patient and an artist from Texas, USA tells her story.

Hello, my name is Kimberly.  I am a 42 year old artist, teacher, mother and wife.  I have had FCAS since I was an infant (it being hereditary) Many of my cousins, aunts, uncles, my grandmother, my father, my sister and my 3 children all live or lived with this condition.  I have dealt with a daily red rash and occasional episodes of chills, fever, lethargy, and joint pain.  I live in a very warm climate (South Texas, USA) and have found my temperature limit seems to about 74 any colder and I get a chill.  I have had genetic testing and have been diagnosed.  I am currently seeing a reumatologist and taking Placquanil which does seem to lesson the hard symptoms (chills, joint pain) but does nothing for the rash and cold sensitivity.  I hopeful for an affordable medication that my family and I can take to improve our quality of life.

 

 

 

If you live with or care for somebody with Muckle-Wells Syndrome, CINCA or FCAS and would like to share your story, please email us at: tellmystory.caps@rarediseasecommunities.org

Written by Kimberly, published 7 months ago.

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