Gorham-Stout Disease: dissolving bone disease

Posted by peggyn @peggyn, Dec 9, 2022

My sister is in awful pain everyday.She has been to so many different drs. The pain dr. does not help, he has her on tramadol and tylenol..This does not help.She has a ulcer on the bottom of her foot which has not healed in 2 years,even after being on IV antibotics for months.The last thin is dissolving bone disease in her shoulder, she cannot even lift her arm.I don't think she is getting the best medical care because I don't believe anyone should be in so much pain all of the time.I'm just wondering what this dissolving bone disease is and what she might could take to help it.

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John, Volunteer Mentor | @johnbishop | Dec 10, 2022

Hello Peggy @peggyn, I'm sorry to hear that your sister has not been able to get some relief for her pain. I had not heard of vanishing bone disease but found out it is called by many names and is a rare disorder. Here is more information on the condition, including standard and investigational therapies.

"Gorham-Stout disease (GSD), which is also known as vanishing bone disease, disappearing bone disease, massive osteolysis, and more than a half-dozen other terms in the medical literature, is a rare bone disorder characterized by progressive bone loss (osteolysis) and the overgrowth (proliferation) of lymphatic vessels."
-- Gorham-Stout Disease: https://rarediseases.org/rare-diseases/gorham-stout-disease/