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THE WARRIOR MAMA IBD

KAREN FISHER BALL
STURGE-WEBER FOUNDATION
11 / 2021
9780967048420
Inglés

Sinopsis

Karen Fisher Ball is The Warrior Mama. She?s made it her life?s mission to encourage research and ¡discover treatments for Sturge-Weber syndrome (SWS), a vascular malformation neurocutaneous disorder that is characterized by a congenital facial birthmark, glaucoma, and neurological abnormalities.When Karen?s daughter was diagnosed at birth with SWS, few resources were available for families and caregivers. No support groups, guidebooks, websites, or even brochures on the complexities of this unique condi¡tion. A guide to living with SWS simply did not exist. In fact, many medical prac¡titioners had no experience with diagnosing or treating children with SWS.Inspired by faith and driven by determination, Karen blazed her own trail and created the Sturge-Weber Foundation to battle SWS. She embarked on a fundraising and research journey through the medical community and the pharmaceutical industry that has helped people worldwide.In Part I of The Warrior Mama, Karen traces the source of her strength through her family?s history in the Old West - Butte and Helena, Montana. In Part II we hear the voices of other Warrior Mamas and their tales of battling SWS in their children. Part III introduces the Sturge-Weber Foundation and its early efforts to enlist the National Institutes of Health in search of solutions. Finally, Part IV delivers wisdom and observations from Karen?s blog.There is sadness and joy in these stories, and plenty of hope - hope for anyone who feels they are facing an impossible situation with the health of a loved one.Part autobiography and part inspirational guide, The Warrior Mama captures the essence and energy that Karen and her fellow warriors have drawn upon to build an extended family of support for everyone affected by Sturge-Weber syndrome and a Port Wine Birthmark.