PWSA (USA) is an organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those affected by Prader-Willi syndrome.

Medical

Because PWS is so unique and subtle symptoms can be signs of a serious condition, it is imperative for all parents and professionals working with the syndrome to review this medical section.

More information is available when needed by calling 800-926-4797 or 941-312-0400.

• Angel Flight @ NIH provides air transportation for patients who are in financial need and cannot afford the cost of air travel. For more information go to www.angelflightatnih.org.
• Medical Alert: Important for Medical Treatment
• Guidelines for Postoperative Monitoring of Pediatric Patients
• Considering Supplements? [Click here]
• Growth Hormone: Consensus Statement, Treatment and Medical Concerns. [Click here]
• Dental
  • Dental Tips and Tricks
  • Salivary Flow and Oral Abnormalities in PWS from the Taiwan International conference 2010 [Click here]
• Orthopedic Issues
  • Osteoporosis Evaluation and Therapy in PWS

  • Clinical Concerns for the Orthopedic Surgeon

• Respiratory
  • Respiratory Problems
  • Recommendations for Evaluation of Breathing Abnormalities Associated with Sleep
  • Instructions for saving a choking victim using the Heimlich Maneuver
• Skin Picking
  • Publication by Drs. Linda Gourash and Janice Forster of the Pittsburgh Partnership [Click here]
• Spinal Issues
  • Scoliosis Survey Results
  • Surgical Treatment of Spinal Deformity
• The Children's Institute, Pittsburgh, PA [Click here]

Anesthesia, medication reactions

People with PWS may have unusual reactions to standard dosages of medications and anesthetic agents. Use extreme caution in giving medications that may cause sedation: prolonged and exaggerated responses have been reported.

• Anesthesia
• Anesthesia Concerns

Comprehensive Management

• Endocrinology video overview on Prader-Willi syndrome by Mayo Clinic [click here]
• A Comprehensive Team Approach to the management of Prader-Willi Syndrome
• PWS Overview and Management - Medical Home Portal Development, Utah Medical Center. Dr. Merlin Butler, chairperson of our PWSA (USA) Scientific Advisory Board, reviewed and edited this website written for families and primary care physicians. To access this site, [Click here]

Telephone (800) 926-4797

• Psychiatric Concerns
• Diet Resources