17 Things You'll Only Understand If You Have A Rare Disease

Hi. It is been a long time since I posted something. The road to recovery after years of battling Cushing's disease can be long and curvy. I've had three very rough months, and I'm finally coming out the other side of it. When I get a chance, I will relay those details to you here. For now, I'd like to share this little bit I found on BuzzFeed.

17 things you'll only understand if you have a rare disease.

http://www.buzzfeed.com/findacure/17-things-youll-only-understand-if-you-have-a-rar-1bze2

Pituitary Patient Sues for Misdiagnosis

Pituitary tumors are not as rare as people think. Studies of autopsy reports show that up to 20% of the population -- one in five people -- have a pituitary tumor. However, doctors continue to dismiss patents with acromegaly and Cushing's, causing years of sickness and despair.  One can only hope this court ruling prompts a few MDs study up on pituitary disorders.

For the full story, click through to the BBC website. 

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From the Pituitary Network Association (www.pituitary.org):

–	Why Is Early Diagnosis Such A Problem? The confusing constellation of symptoms that can be produced by pituitary tumors and the difficult to visualize location make diagnosis very tricky. It is not uncommon for patients to have symptoms of either hormonal deficiency (caused by compression of the pituitary or its "stalk") or hormone excess (caused by unregulated production of hormones by the pituitary tumor). In a significant minority of patients diagnosis is not made until the individual has developed debilitating or life-threatening symptoms of heart disease or adrenal (uncommon), gonadal and/or thyroid insufficiency. Even in the 21st century death from a large pituitary tumor or hormonal deficiency still occurs, albeit rarely. Early diagnosis is usually a reflection of a high index of suspicion on the part of a physician. Unfortunately, many doctors have been taught that pituitary disease is rare, so it is not at the forefront of their list of possible diagnoses.
–	How Prevalent Are Pituitary Tumors/Disease? Autopsy reports and radiologic and MRI evidence from around the globe indicate that one out of every five people worldwide has a pituitary tumor. The earliest study took place in 1936, when Dr. R.T. Costello of the Mayo Foundation conducted a cadaver study and found pituitary tumors in 22.4 % of the population (Costello R.T. Subclinical adenoma of the pituitary gland. Am. J. Pathol. 1936; 12:205-214). Statistics have not changed much ever since. The clinical significance of these findings are critical to determine.
–	Why Are These Tumors So Common? We don't know because funding for benign brain tumor research is virtually nonexistent. That's about to change. In October 2002, Congress passed the Benign Brain Tumor Cancer Registries Amendment Act, which will force hospitals, clinics and doctors to report pituitary tumor incidence rates in the data collection of cancer registries. The problem remains diagnosis. No report of incidence rates is possible without it.

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Why Aren't Pituitary Tumors/Disease Common Knowledge? There are four main reasons: Pituitary tumors/disease present a vast array of symptoms, and it's often the symptoms that get treated, not the disease. As a result, pituitary patients can spend years being misdiagnosed as their tumors grow. People with undetected pituitary tumors can die of heart attacks, hypothyroidism, adrenal insufficiency or water balance problems, all of which can mask the main cause: a pituitary tumor. Dollars spent. As a result, we have failed to answer the most important question: Why are pituitary tumors so common? There is a lack of education within the medical community and among the general public. The insurance industry hasn't caught on to the untold billions of dollars that could be saved through early diagnosis and treatment. Once it becomes clear that it's in everyone's best interest, the word will spread.

Day 25: Another look at Cushing's

For those of you on Facebook, you may recall these Subject Slides going around.  The "What ___ say" part was always the same.  I saw some about Kansas, teachers, military intelligence, and everything else in between.  This is the one I created for Cushing's disease. I consider this one the "nice" one, as friends and family usually say things much more damaging, and doctors are in equal measures just as dismissive and heartless to the patient sitting in front of them.