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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