There has been a lot of research related to the pandemic’s effects on patient populations over the last year. Many journals temporarily bypassed lengthy review periods to get COVID data disseminated faster, usually in special or digital editions. Patient advocacy organizations created in-house research projects to help providers understand what their membership was experiencing. Larger… Continue Reading
Category Archives: Coping With Cushing’s
Medications for Cushing’s – Old and New: Part One in a Two-Part Series
The first line of treatment for endogenous Cushing’s (caused by a tumor inside the body) is surgery to remove the tumor. More often than not, though, the patient’s medical journey does not end there – about a third of pituitary patients will not have a successful first surgery, around a third of initially successful surgeries… Continue Reading
Things We Wish We Had Known
It’s virtually unanimous that Cushing’s patients get past the immediacy of diagnosis and treatment and look back on the process and think “I really wish I would have / would have known….” about pieces of their journey that were particularly difficult in the moment. There are parts of the post-treatment “new normal” that only a… Continue Reading
Research Summaries
Patient-reported outcome questionnaires are frequently used across specialties to help patients explain how their illness or treatment is affecting them. We mention four of these questionnaires in this issue, so we decided to include two summaries of original research published when the questionnaires were created, and two summaries of research reviewing existing questionnaires to evaluate… Continue Reading
Discovering Your Voice: Advocacy After Cushing’s
Marie Conley and Amy Dahm The Merriam-Webster dictionary has a three-pronged definition for the word advocate: one who pleads the cause of another; one who defends or maintains a cause; and one who supports or promotes the interests of a cause or group. From that definition alone, you can probably think of many things for… Continue Reading
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