“The way to the unknown” I never considered myself vain enough to pursue beauty regimens with the aim of improving my physical appearance. I’m 28 years old, single, without kids. However, a number of physical things led me to a dermatologist in August 2018: stitches from injuries sustained in falls that did not heal, I… Continue Reading
Author Archives: Isabel Paterson
Rare Disease Summit: A New Era of Patient Focused Innovation
By: Leslie Edwin and Amy Dahm Two delegates – Leslie Edwin, President, and Amy Dahm, “DC Correspondent” – represented the CSRF at the National Organization for Rare Disorders (NORD) Orphan Products Breakthrough Summit at the Marriott Wardman Park in Washington, DC October 14-16, 2018. Sam, Amy’s service dog, accompanied them to the conference and information… 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
Your Unsolicited Ticket to the Chronic Illness Roller Coaster
The Experience of Chronic Illness If you have ever felt like no one in your life can truly comprehend what it’s like to survive through the experience of Cushing’s, maybe it can be a small bit of comfort that virtually 100% of patients report some level of misunderstanding, ignorance, and even intolerance from friends, family,… Continue Reading
Caregiving & Cushing’s
“Rarely can a response make something better. What makes something better is connection.” —Brené Brown from her animated YouTube video, “On Empathy” You may have never thought of yourself as a caregiver, but there’s a good chance you provide caregiving if you support a Cushing’s patient in any way. One of the challenges for society… Continue Reading
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