Imagine not being able to pick up a pencil without your fingers hurting. Sending a letter, doing a crossword puzzle, these are just a few of the simple tasks that trigger pain in your joints on a regular basis. This can be a reality people with Ehlers-Danlos syndrome face every day. Except that this pain often is felt from head to … Read More
NIH panel: Patient-centered approach needed for pain management
Those suffering from chronic pain need individualized care strategies to be best served by their physicians, according to the recent findings of an expert panel convened by the National Institutes of Health (NIH). “Persons living with chronic pain have often been grouped into a single category, and treatment approaches have been generalized with little evidence to support this practice,” said … Read More
TCAPP and Genelex: Partners in battling pediatric pain
It’s tragic when a young life is haunted by the specter of a disease that causes chronic pain. Such afflictions affect child and family both, making the availability of caregiver resources all the more vital. Since 2011, The Coalition Against Pediatric Pain (TCAPP) has been supporting families of children affected by chronic pain from rare diseases and has brought many … Read More
Participating in life again: A patient story of pediatric pain
Barbara Granoff, Founding Member of The Coalition Against Pediatric Pain (TCAPP), says her 15-year-old daughter’s life was changed by the DNA drug sensitivity testing Genelex offers. Shira is living with Ehlers Danlos Syndrome as well as dysautonomia, gastroparesis, Mast Cell Activation Disorder and more. “The amount of medications we tried in hopes of controlling the pain is mind boggling,” mother … Read More