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Marie C (Marie Conley), Pituitary Bio

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I was diagnosed in June 2012 with Cushing’s Disease after almost three years of a variety of illnesses.

My husband and 8 year son have seen me through a brain surgery and its failure, permanent DI, removal of my adrenal glands, a hernia surgery, a severe hip fracture, four additional hospital stays including 10 ER visits.

I used humor to get me through these past couple years (and prayer). I needed to laugh as I gained 81 pounds (while doing a sprint Tri, running a 10k, and working out when I wasn’t on crutches), having hairy arms, a hump on your back and so much more.

I have been lucky enough to continue to work and am blessed with a supportive family and friends.  I hate this disease for so many reasons but I am not going to give in to it.

I feel very lucky that someone directed me to this site and I am grateful for the opportunity to not feel alone on this journey.

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Gina M, Ectopic Bio

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I was diagnosed with Cushing Syndrome in June 1999.  At that time my urine cotisol level was 342.

Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.

I had pituitary surgery at Mass General because my state didn’t do that type of surgery.  After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.

When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.

In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.

I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!

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