Medical
PWS Utah Clinic
Utah houses one of the top medical clinics treating children and adults with Prader-Willi syndrome. This clinic began in 2006 and provides 9 clinicians including genetics, endocrinology, psychiatry, psychology, pulmonology, nutrition, speech therapy, occupational therapy, and physical therapy. You will meet with the clinic providers once a year and then work with your local doctors throughout the year, in conjunction with the advice and care of the PWS medical clinic.
Please reach out to Brooke Ramos for more information brookeramos@upwsa.org.
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​ER Protocol
The following link will lead you to a document that outlines what you should do in the event that you are headed to the Emergency Room with your child. If you call Brooke Ramos, she will put the clinic in contact with whichever ER you are going to. As long as you provide her with the hospital you are going to, she will complete the steps so you have one less thing to worry about.
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Health ID Card
A personalized ID card with photo to share with medical staff who may be unfamiliar with PWS, related medical issues and precautions that should be taken during treatment.
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Medical Fact Sheet
An extensive but concise list of medical issues that could be shared with medical personnel such as emergency room staff to give a quick and broad understanding of issues.Could help with diagnosis/triage. Could also be helpful to nursing staff during a hospital stay.
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Medical Tri-Fold Brochure
Offers a broad understanding of PWS including an explanation of the syndrome and a summary of medical issues that could be helpful and informative for teachers, school nurse, camp staff, day care staff, respite workers, family members and friends helping with care, etc.
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Letter for use with patients of PWS Medical Clinic
Letter written by PWS Clinic Nurse, Annabelle Wilcox, that could be provided to specialists unfamiliar with PWS or with specific gastric issues with PWS.
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Medical Release of Information Form
Form a family can fill out to allow a UPWSA Family Support Coordinator or other designated person have access to their child’s medical information. This allows others to be of assistance by acting on behalf of the family to make requests or resolve issues.
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