The Conley Cushing’s Disease Fund was established on July 17, 2014 and is a project of The Foundation for Enhancing Communities, fiscal sponsor. The funds raised will be used in part to support patients and their loved ones who are suffering from this disease. It will also work to create awareness and advocacy trainings by collaborating with medical professionals, hospitals, organizations ,and all others working with Cushing’s patients on the early diagnosis of this disease. These efforts will ensure those trained are equipped to spot the disease more quickly and effectively, and empathically manage Cushing's disease symptoms in patients.
After more than two years of symptoms that didn’t seem connected (including four bouts of bronchitis, pneumonia, strep, shingles, a fractured hip, a “hump” on my back between my shoulder blades, a mysterious umbilical hernia and foot problem as well unexplained weight gain of over 70 pounds in less than 15 months), I finally had an answer to what was causing my body to go into a downward spiral. I had seen 10 different specialists and had hundreds of tests. Now even though the diagnosis was devastating, at least we had a name for it.
Looking back, it is hard to say when my story began, but Cushing’s disease was not part of my vocabulary until September 2020. As the world was quickly shutting down in March of 2020, I finally had my endocrinologist appointment that I anxiously awaited six months to have.
What I learned early on from patients' experiences with Cushing’s disease is that it often follows an unpredictable path and leaves a person in an immediate reaction response, unaware of the next curveball it might throw their way. Since Cushing’s syndrome is a rare disease, you are left with many unanswered questions and finding the correct treatment becomes a stressful job.
Most of my Cushing’s journey has circled around important milestones in my life. I guess that’s what happens when you start to get sick during your transition into college. This was the time I was supposed to be learning, growing, becoming independent and finding myself. In a way, I suppose all of these things were still a part of my college experience, however, I also had to balance regular doctor’s visits and 24-hour urine samplings all while starting a new life in a new city on a college campus that was 6 hours away from home.