Name : Emily Huyck
E-mail : firstname.lastname@example.org
Teenager: 16 years old
Reported by parents: Steve & Nichole Powers; Jeremy Huyck
Location: Salem, Oregon
Area(s) affected: 5 & 7 Right Rib and Vertebra
Diagnosed 09.11.2014 secondary to symptoms following volleyball practice. Coaches were worried about her "chest" pain and sent her to the ED. The x-ray report was initial bone carcinoma however secondary readings and a follow up MRI & CT scan ruled out carcinoma. Emily entered into Shriners Children's Hospital Research program in St. Louis, March of 2015 and has been followed by her amazing pediatrician Emman Germann, MD at Kaiser Permanente in Salem OR, and Dr. Whyte's team at Shriners.
Treatment for symptoms has been very difficult. Emily does respond well to heat and at this time takes over the counter medications, however this serves more as a placebo effect, then true relief. Emily has elected to not take anything stronger for pain relief. She also uses topical essential oils and stretching to help when the pain increases. She has stretch bands and finds laying flat on her back during episodes helps.
She describes her pain as intense "deep inside" pain. She also feels like she has to "burp" (which she calls hiccup because it's more lady like) right before an attack of pain. Pain episodes can last 5 mins or 5 days it just depends.
She has been able to maintain her active lifestyle and plays Volleyball 2-4 days per week. She is excited to be part of NIH one day and is learning more each day on how to live with her disease.
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