Cushing's Awarness Day - April 8 (info for Media)

Erin Kelley
erinmariekelley@gmail.com

April 8, 2009
National Cushing’s Disease Awareness Day

I am writing to you as a member of the media to ask that you feature a Cushing’s Awareness item of some sort on your program or in your paper. I was diagnosed with Pituitary Cushing’s Disease (a tumor on your pituitary gland causes your body to overproduce Cortisol – which signals your adrenal glands to overproduce ACTH, putting your body in constant state of Fight-or-Flight) recently and will be having neurosurgery at Barnes Jewish Hospital on April 27, 2009.

Cushing's Disease has several "hallmark" symptoms: unexplained weight gain in the upper body with increased fat around the neck and face (moon face); a hump at the nape of the neck (buffalo hump); facial flushing/plethora; muscle wasting in the arms and legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms and breasts; poor wound healing and bruising; severe fatigue; depression, anxiety disorders and emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure and high blood sugar/diabetes; edema; vision problems; premature osteoporosis; and, in women, signs of hyperandrogenism such as menstrual irregularities, insulin resistance, infertility, hirsutism, male-patterned balding and steroid-induced acne. I have most of the symptoms – but there is no “typical” Cushing’s patient. You can have one or all.

The disease is rare and very difficult to diagnose, and it is often missed. My personal experience goes back almost 11 years. From Senior year of High School through the summer of my freshman year of college- I began to gain a lot of weight – in one year going from a size 6-8 to a size 26-28 – and gaining over 100 pounds. Stretch marks covered my breasts, abdomen, thighs, butt and arms. All of the marks were a dark purple shade – some of them thick enough to place a finger in.

I had always been active – I ran track and cross country for my high school - and swam competitively year round for a USS team and a summer league. I finished a half marathon. Track and Cross Country got more difficult – I was always exhausted, was diagnosed with chronic mono and had walking phmenoia a few times Junior and Senior year –and developed severe stress fractures. I joined a rugby team a few years ago and played as tighthead prop – that was too much. I have always been active – playing random games of tennis – joining teams for sand volleyball and softball.

In 1999 I graduated and in 2000 I went to see a new primary care physician with complaints of thirst, not having menstrual cycles, not sleeping, exhaustion, constant hunger, high blood pressure, and inability to concentrate. He ordered tests which showed that I was not diabetic and sent me to an endocrinologist – who eventually diagnosed Poly Cystic Ovarian Syndrome. I was put on medication for Insulin Resistance, on birth control to level out my hormones, on medication to force a period, blood pressure medication, and sent to a dietitian who insisted I was consuming almost 4,000 calories a day (which I was not coming even halfway close to). A psychiatrist diagnosed me with ADHD and placed me on Adderall.

For the next 10 years I was in and out of the doctor’s office with one weird complaint after another. I am always sick. I have had doctors suggest or diagnose Lupus, Liver Disease, High Blood Pressure, GERD, Lymphoma, ADHD, PCOS, Migraines, Obstructive Sleep Apnea – the list goes on – there was always a theory and always a test or a treatment. Many suggested that I was just plain fat and needed to work out more and eat less. Chest infections, sinus infections, skin issues (bug bites/poison ivy, etc) that took months to heal and scar badly, major dental problems, problems sleeping, strep throat 3x per year or more, major headaches, no periods, itchy acne that comes and goes on my jawline, odd allergies that come and go, and the final straws in my barrel - MRSA staph infection two times in two months – first on my lower leg and then under my rear, and liver enzymes ALT and AST both near 400.

Lots of medications treated all of these symptoms – but no one was able to explain what was causing them.

I went in for a check up and said that I felt that something was wrong. I was 27 at the time – and felt like I was 98.

One 24 hour urine test (cortisol) and I had my answer – it was 2x the normal high level and according to everything I googled – was diagnostic of Cushing’s Disease. What I read told me that this could be the explanation for all of my symptoms. I remember a fellow mentioning that he thought I had Cushing’s Disease when I went to an Endo the first time – but didn’t hear anything more after that. I came to the site Cushings-Help.org and sat for hours and hours reading MY story on other women’s blogs and in the forums. I now knew what to do/who to see/what to ask and how to seek a diagnosis. Cushing’s disease was featured on Mystery Diagnosis, House – I knew that this was not normal and in fact a very rare disorder. If I didn’t have Cushing’s Disease – so be it. But If I did – I wanted it diagnosed and cured as soon as possible!

My PCP was not convinced this was the issue and I was referred to a Gastroenterologist who proceeded to do a liver biopsy, Endoscopy, flex sig, and many other blood tests. I went ahead and sent my test results and story to an Endo who was very familiar with Cushing’s who encouraged me to schedule an appointment with an Endo here in St. Louis. I went ahead and made the appointment and referred myself.

Fast forward through many, many procedures, tests, visits, copays, a few amazing doctors and long sleepless nights. Upon receiving the results from an IPSS (inferior petrosal sinus sampling) I was finally scheduled for neurosurgery done by an ENT and Neurosurgeon (they will go through my nose to reach the pituitary gland) to remove a micro adenoma (tumor) and whatever other tissue is causing the overproduction of cortisol in my system. The surgery is April 27th. 60% of Cushing’s cases are cured by this first surgery alone. My neuro has told me that if the surgery is not a cure: next comes Gamma Knife radiation and then surgery to remove both adrenal glands.

I am praying for a cure on April 27th – and that someone might hear this story or read this article – see themselves and their struggles in it – and demand testing. I don’t know where I would be in 10 years if I hadn’t ---- thankfully I don’t have to know.

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My name is Erin Kelley. I am 28 years old and live in Sunset Hills with my husband, 4 year old son and 8 year old stepson. I work in fundraising for a local non profit organization.

For more information on Cushing’s Disease please visit:

Cushing’s Help Organization
http://www.cushings-help.com

National Endocrine and Metabolic Diseases Information Service
http://www.endocrine.niddk.nih.gov/pubs/cushings/cushings.htm

Mayo Clinic
http://www.mayoclinic.com/health/cushings-syndrome/DS00470