Ending an "out of date practice" proves critically damaging for a under-diagnosed patient community

One in five people are identified to have a pituitary tumor when studied at autopsies. How will we know anything about the pituitary now?

And grisly?! Unless the coroner cracks the skull open on a stone like a coconut, I feel confident in saying that actually LIVING with pituitary tumors and dysfunction is really what makes life grisly.

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Colorado coroner update signed into law

| April 4, 2013 | Updated: April 4, 2013 5:39pm

DENVER (AP) — An update to Colorado antiquated coroner system has been signed into law. Gov. John Hickenlooper signed the update Thursday.

The law updates death-investigation protocol. Changes include a requirement that law enforcement must call coroners as soon as a body is discovered — not after a potential crime scene investigation is complete.

The coroner law also eliminates the grisly but out-of-date practice of removing pituitary glands in autopsies.

The coroner update comes two years after Colorado set new standards for when the state's mostly elected coroners must order autopsies.

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Coroner law: http://bit.ly/16tMTrh

http://www.chron.com/news/article/Colorado-coroner-update-signed-into-law-4410741.php

MAGIC & Giving Forward

The big announcement has been made!

The 8th Annual Convention for Adults with Pituitary Disorders will be held in Las Vegas, Nevada from Friday, April 19, 2013 to Sunday, April 21, 2013. Many will arrive on Thursday and leave Sunday or Monday.  Please mark these dates in your calendar and plan to attend, as this will be a wonderfully informative and fulfilling experience as you meet many others with your 'rare' disease.

I posted about the importance of the Magic Foundation on my blog before.

Today, I also wanted to direct you to a place where you can help folks who need a little extra help to cover the expenses to attend the MAGIC Convention. Knowing first hand how much the MAGIC Convention helped her, my dear friend Karen has spearheaded a program to help patients with pituitary disorders join fellow Cushies at next year's MAGIC Foundation's annual convention. I ask you to contribute to the Educational Program Scholarship at giveforward.com for this cause.

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Other resources:

• facebook.com/TheMAGICFoundation
• magicfoundation.org
• Cushing's page for the MAGIC Foundation

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.

"Pituitary Disorders, the Often Missed Diagnosis"

"Pituitary Disorder:  the Often Missed Diagnosis"

Dr. Lewis Blevins is the medical director of the California Center for Pituitary Disorders at UCSF Medical Center.  In this interview, he discusses the trickiest gland in the body.  The transcript and audio are posted on their patient education page.

Day 21: Magic Foundation hosts Cushie Convention

A patient with Cushing's often travels a long and lonely road to diagnosis. Surrounded by friends and family who mean well but don't quite get it, a Cushie longs to connect with others who knows what it is like to fight while living with  Cushing's.

Well, here's your chance!  

Many Cushing's patients attend the annual Magic Foundation convention. While the Magic Foundation is known for advocating for children and adults with growth hormone deficiencies, they also have Cushing's patients at the MAGIC Foundation.  Stacey, the group's moderator, shares her personal story about Cushing's.

Anyhoo.

MAGIC offers an educational program for adults who are affected with Growth Hormone Deficiency and/or other endocrine disorders.

2012 - The 7th Annual Educational convention for Adults with Pituitary Discorders

The  

MAGIC Foundation 

presents: 

The 7th Annual Convention  

for Adults with  

Pituitary Disorders  

Including:

Adult Growth Hormone Deficiency  

Panhypopituitarism 

and Cushings!

Thursday - Sunday 

July 19-22, 2012 

The Westin Lombard   

Yorktown Center 

Lombard, Illinois

Westin Hotel in Lombard
(subdivision area of Chicago)

Chicago, Illinois

Click through for convention program and online registration form.

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Enjoy the fun. I won't be able to make it this year, but one day I promised myself, I will. It's too good of a party to pass up.