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…ese stories and journal will help kids and their families understand and become more comfortable with all the medical appointments, start conversations, and feel less alone in their struggles. Buy Digging Deep here on Amazon. Digging Deep, A Journal for Young People Facing Health Challenges Reviewed by Jennifer Tousseau This journal, written by Rose Offner and Sheri Brisson, is absolutely the best I have ever seen for a child living with an illnes…
…syndromes (CAPS) include: Familial cold urticaria syndrome (FCAS) Muckle-Wells syndrome (MWS) Neonatal-onset multisystem inflammatory disease (NOMID aka CINCA) We have an extensive area on our website, starting on this page about CAPS syndromes, and also a medical guidebook on this disease for download on our site in English, or in Spanish. A detailed page on CAPS genetics, and one on FDA-approved CAPS treatments are also on our site. Helpful rese…
…d Periodic Syndrome) The enlarging clinical, genetic, and population spectrum of tumor necrosis factor receptor-associated periodic syndrome – This study mentions that elevated IgD in a TRAPS patient led to a misdiagnosis of HIDS. “The finding of high IgD levels in one of the families with the T50M mutation contributed to an erroneous diagnosis of HIDS. The same error can probably be found retrospectively in the original description of HIDS by Van…
