The story of Rachel
In October 2008, I was diagnosed with Cushing’s Disease, a rarely diagnosed endocrine disorder involving a hormone-secreting tumor of the pituitary gland. I’d been sick for years by the time I got diagnosed, fighting problems with depression, mood swings, weight gain and many other physical abnormalities. I visited several doctors, who either misdiagnosed me or told me I was fat, and I needed to eat less and exercise more. My mother sent me to her endocrinologist at Vanderbilt in Nashville, Tennessee, and she saved my life. By December 2008, I had underwent my first pituitary surgery, removing the parts of the tumor that my neurosurgeon could find. There is no cure for Cushing’s Disease yet, but I did go into “remission,” which is the next best thing. Unfortunately, my tumor recurred, so I had another pituitary surgery in Seattle in August 2011. I went into remission immediately after, and have stayed in remission since. I now have no pituitary function at all, so I must take oral supplements for most of my pituitary hormones in order to live a “normal” life. Life isn’t normal at all, but I get through it as well as I can by advocating for Cushing’s awareness via my blog, http://cushieworld.wordpress.com and a joint venture with my friend, http://cushingstories.com. My story isn’t uncommon, as many other sufferers have experienced almost identical struggles. By understanding and supporting rare disease, we will prevail and make this world, and its’ health, better for all of those that come after us.