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ctwilson

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1 reviews

Review for Systemic Jia Foundation, Cincinnati, OH, USA

Rating: 5 stars  

My son was diagnosed at age 15 with SJIA after three months of unexplained fevers and elevated lab markers. There were no rashes, swollen joints or any of the usual symptoms of SJIA. Finally, a swollen elbow allowed for diagnosis of SJIA and MAS, treatment and medicated remission, except for 3 flares during the past five years. We attended a SJIA conference in DC a few years back and learned of the FB support group with many dedicated members, including Rashmi Sinha, who, with her husband, started the Systemic JIA Foundation. The support provided by the members and Rashmi is immeasurable, especially for parents who are seeking advice to help their children navigate this disease. Rashmi attends meetings and conferences and reports recent advances back to parents unable to attend. She will also advise parents who to contact for certain aspects of the disease. Rashmi and so many others give of themselves to help others, providing much needed support to many families. While it is heartbreaking to read what is happening to so many children, I appreciate being able to learn about the many varying aspects of SJIA, as it is so important to stay informed. Thank you, Systemic JIA Foundation, for your services. It is truly appreciated. - Carol Wilson

Role:  General Member of the Public