Arthritis - @cacpresearchfoundation

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“This is our daughter Kinslee representing rare disease at the Arthritis Foundation’s Jingle Bell Run. She was initially diagnosed with Juvenile Arthritis at 2 years old due to her contracting fingers, swollen joints, and complaints of pain. Unfortunately no arthritis medications helped, so her rheumatologist helped us seek out genetic testing which revealed her rare type of arthritis called CACP (Camptodactyly, Arthropathy, Coxa Vara, Peri-carditis) Syndrome. There are currently no treatments or cure for CACP Syndrome. There was also no foundation or network to provide further information or support like the Arthritis Foundation had done for us during her initial diagnosis. So, we created the CACP Research Foundation to do just that. Our aim is to spread awareness to decrease the chances of misdiagnosis, provide early diagnosis through genetic testing, and research treatments in hopes of a cure. We have been very fortunate to have found other CACP patients through our Foundation but there is lots of work ahead and it starts with awareness. We love these A.W.A.R.E. pins, and wear them on a variety of clothing, bags, and other accessories everywhere we go! We appreciate the opportunity to share Kinslee’s story with the help of @awarecauses. Please visit our website: www.cacpresearchfoundation.com to learn more about us and CACP syndrome.” @cacpresearchfoundation 

Arthritis

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