Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

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Jul 11, 2019 · Teen Navigates Ehlers-Danlos Syndrome With the Help of Clinical Genomics

Nicole, thank you for sharing your story. My daughter is currently suffering from VERY similar symptoms as you described. She was diagnosed with EDS one year ago, but we cannot find treatment for her. She now has little use of her arms and falls frequently when walking around our home. Her hips, arms, and shoulders dislocate and subluxate often. She is in a wheelchair when we go to appointments, but her "normal" life has been put on hold. Her muscles are in burning pain, and she does not respond to pain medication. She has been wearing an Aspen collar for seven months now as her head feels detached (recommended by her neurosurgeon). I happened upon your story as I desperately searched the web for more options for her care. I cannot thank you enough. I have called Mayo's appointment department and am having her medical records faxed over tomorrow. I pray she too has new hope and a new life through the care of the Mayo Clinic and Dr. Dhamija.

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