- Category: Cushing's
- Published: 12 September 2013
- Last Updated: 12 September 2013
- Hits: 1203
There's a link to the Glossary at at the left menu of every page here: http://www.cushings-help.com/definitions.htm
Some abbreviations used on the boards, articles and throughout the bios are...
ACTH: Adrenocorticotropic Hormone. ACTH is a normal by-product of the anterior pituitary gland. It acts by controlling the secretion of the adrenal hormone, cortisol. Produced by the pituitary gland. A pituitary tumor often causes too little ACTH to be produced. Symptoms of ACTH deficiency include weakness, fatigue and gastrointestinal disturbances.
AD: Addison's/Adrenal Disease
ADH: AntiDiuretic Hormone. ADH is a critical hormone that regulates water balance in the body by controlling how much water the kidneys release into the urine. Too much ADH secretion by the pituitary causes the syndrome of inappropriate antidiuretic hormone (SIADH), in which the salt levels in the body can drop dangerously low due to holding on to too much water. Treatments may include fluid restriction and salt supplementation. Too little ADH results in diabetes insipidus (DI), in which the body constantly produces a clear high volume of urine accompanied by extreme thirst. The treatment is fluids and a medicine called DDAVP.
AHRQ: Agency for Healthcare Research and Quality
AI: Adrenal Insufficiency/adrenal crisis. Adrenal insufficiency is a life threatening chronic illness. An active and vigorous lifestyle with normal life expectancy is possible as long as the prescribed medications are taken regularly and adjusted when indicated. As with most chronic diseases, adrenal insufficiency demands that the patients take responsibility and develop self-management skills and techniques.
APACHE: Acute physiology and chronic health evaluation
BG: Blood Glucose
BIPSS: Bilateral Inferior Petrosal Sinus Sampling
BLA: Bilateral adrenalectomy. Surgical removal of both the adrenal glands.
BMD: Is often used as an acronym for bone mineral density
BP: Blood Pressure
BS: Blood Sugar (ahem...usually)
BUN: Blood Urea Nitrogen
CAT Scan / CT: computed tomography
CBG: corticosteroid-binding globulin
CD: Cushing's Disease
CCHS: Congenital central hypoventilation syndrome
CI: Confidence interval
CIRCI: Critical illness-related corticosteroid insufficiency
CRH: Corticotropin Releasing Hormone
CRP: C-reactive protein
CS: Cushing's Syndrome
CSF: cerebrospinal fluid
DEXA: dual energy x-ray absorptiometry
DI: Diabetes Insipidus
DST: dexamethasone suppression test(s)
EAA: excitatory amino acid
EAS: ectopic ACTH secretion
EBV: Epstein Barr virus
FSH: follicle-stimulating hormone
GABA: y-aminobutyric acid
GH: Growth Hormone
GTT: glucose tolerance test
GTR: gross-total resection
hGH: Human Growth Hormone
HPLC: (high performance liquid chromatography) is mass spectrometry. It is a way to take a liquid sample and get it into a mass spectrometer to analyze the sample. The liquid chromatograph is the attachment on the mass spec that does this. It can be done several different ways. But always these are just the machines used to do the job.
HPLC: high-pressure liquid chromatography
HRT: Hormone Replacement Therapy
ICD-9: International Classification of Diseases, 9th Revision
IGF-1: (also known as Serum IGF-1 or Somatomedin C) is a polypeptide hormone. It belongs to a family of peptides whose levels are regulated by growth hormone (GH) through receptors. IGF-1 is secreted mainly by the liver and has potent growth stimulating activity. Its mitogenic activity has caused interest in its possible role in cancer growth but its present clinical use is for the diagnosis of human growth disorders. Less than 5% of IGF-1 is free and the rest is bound to IGF-binding proteins (IGFBP). The major one in circulation is IGFBP-3.
IPS/P: inferior petrosal sinus-to-peripheral ratio
IPSS: Inferior Petrosal Sinus Sampling
ITT: Insulin Tolerance Test
JAMA: The Journal of the American Medical Association. JAMA began publication in 1883. It now bills itself as "the world's best-read medical journal". However one defines "best-read", JAMA clearly ranks as one of the two leading general medical journals published in the United States. (The other is the New England Journal of Medicine.)
LINAC: linear accelerator
LH: luteinizing hormone
LO-CHS late-onset central hypoventilation syndrome
LOS: length of stay
LTP: long-term potentiation
MR / MRI: magnetic resonance (imaging)
MSC: Midnight Salivary Cortisol
MSH: melanocyte-stimulating hormone
NIS: Nationwide Inpatient Sample
NS: Nelson syndrome
OR: odds ratio
PCOS: Polycystic Ovary Syndrome
Pheo: A pheochromocytoma is a tumor that originates from the adrenal gland's chromaffin cells, causing overproduction of catecholamines, powerful hormones that induce high blood pressure and other symptoms.
PHOX2B: Paired-like homeobox 2B
PICC Line: A PICC line (Peripherally Inserted Central Catheter) is a semi-permanent IV line), which is inserted into a large vein, usually in your arm although other places may be used. This will allow fluids and injections to be given, and blood samples to be taken. It will save you the discomfort of repeated sticks.
PPNAD aka Primary pigmented nodular adrenocortical disease: A rare disease of the adrenal glands. The adrenal glands are small glands located above each kidney. The adrenals make hormones. Hormones are chemical substances formed in one organ or part of the body that travel in the blood to other body parts where they influence how that body part works. Cortisol is one of the hormones made by the adrenals. Cortisol influences body metabolism (how the body converts small molecules to large and vice versa) and can decrease inflammation. People with PPNAD have adrenal glands that make too much cortisol or make it at inappropriate times (when the body does not need it).
PSS: Petrosal Sinus Sampling
QOL: quality of life
ROHHAD: Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood
SIADH: Syndrome of Inappropriate AntiDiuretic Hormone
SPGR: spoiled gradient recalled acquisition in the steady-state
SRS: stereotactic radiosurgery
TBA: total bilateral adrenalectomy
TSA / TSS: transsphenoidal adenomectomy
TSH: thyroid-stimulating hormone
UFC: Urinary Free Cortisol
- Category: Cushing's
- Published: 15 September 2013
- Last Updated: 15 September 2013
- Hits: 701
Added to the Cushie Bookstore again:
This book is so popular it sells out often.
MaryO'Note: I don't usually write, or post, book reviews, but I just love this book and I'm so glad to see it back in print. I've owned this before my Cushing's days, when I "just" had osteoarthritis - another disease I wasn't supposed to have, at least at my young age. This book gave me such hope and inspiration when I felt I was so alone with my "stuff". It still sits on my bedstand and I read it when I'm feeling down and helpless.
I've bought copies for everyone I know who might benefit from this - and that's practically everyone! Because it's an older book, I got lots of copies at second hand book stores and gave them to all my friends.
So, I'm glad to see that it's listed on amazon again and anyone can get it brand new .
We Are Not Alone: Learning to Live With Chronic Illness by Sefra Kobrin Pitzele
This is an essential layperson's guide to coping with chronic illness-- or the 50 million Americans who suffer from diseases such as arthritis, diabetes, and multiple sclerosis, and for the people who care for them.
With firsthand insights of one who has been there, Sefra Pitzele details every phase, from the frightening onset of disease through the process of readjustment to the successful adaptation to new norms. She addresses the issues that most concern the chronically ill: dealing with relationships; participating in sexual activities; helping your doctor help you; managing pain and depression; maintaining humor and dignity; more. She details adaptive living strategies from new ways to shop and cook to ingenious modifications at home and at work. There are nationwide listings of helpful organizations, support groups, products, and services. 44,000 copies in print.
About the Author
Sefra Korbin Pitzele is Secretary of the National Sjogren's Syndrome Association and serves on the Operations Committee of the Minnesota Chapter of the Lupus Foundation of America. She is co-founder, co-publisher, and Vice President of ADVANTAGE: A Magazine for People with Chronic Health Conditions. She is often the featured speaker at healthcare conferences and on radio and television shows.
A popular book in the Cushie Bookstore is:
by Michael Bliss
Paperback, 591 pages
Here is the first biography to appear in fifty years of Harvey Cushing, a giant of American medicine and without doubt the greatest figure in the history of brain surgery.
Drawing on new collections of intimate personal and family papers, diaries and patient records, Michael Bliss captures Cushing's professional and his personal life in remarkable detail. Bliss paints an engaging portrait of a man of ambition, boundless, driving energy, a fanatical work ethic, a penchant for self-promotion and ruthlessness, more than a touch of egotism and meanness, and an enormous appetite for life. Equally important, Bliss traces the rise of American surgery as seen through the eyes of one of its pioneers. The book describes how Cushing, working in the early years of the 20th century, developed remarkable new techniques that let surgeons open the skull, expose the brain, and attack tumors--all with a much higher rate of success than previously known. Indeed, Cushing made the miraculous in surgery an everyday event, as he and his team compiled an astonishing record of treating more than two thousand tumors.
This is the definitive Cushing biography, an epic narrative of high surgical adventure, capturing the highs and lows of an extraordinary life.
Many helpful books are prohibitively expensive, so you may want to check them out of the library, if possible. I found these from amazon.com interesting.
Read more about the iGive program.
If you know of any good books that I've left out from this list, please let me know.
- Category: Cushing's
- Published: 15 September 2013
- Last Updated: 16 September 2013
- Hits: 771
- Category: Cushing's
- Published: 14 September 2013
- Last Updated: 14 September 2013
- Hits: 465
April 8th is Cushing's Awareness Day. Please wear your Cushing's ribbons, t-shirts, awareness bracelets or Cushing's colors (blue and yellow) and hand out Robin's wonderful Awareness Cards to get a discussion going with anyone who will listen.
And don't just raise awareness on April 8. Any day is a good day to raise awareness.
What Can *YOU* Do to help?
Check out these ideas
1) status of the Cushing's Awareness Day legislation... who has signed, who do we need to get? I have contacts to the US congressfolks from Houston, and I wanted to get them to sign if they have not. Can we get someone to testify before Congress? Can we get any federal funding? Can we rally with other rare disease groups to get in front of that mic on CSPAN?
2) can we do a fund drive for the month prior to April 8th in order to fund all of our projects and this site? can we keep track of how much each board member raises with little thermometers that show how much is collected, in order to get people excited about how much money is being generated?
3) can those who have had surgery in the past year right up there story to be published on April 8th for awareness day? I hope that planning this far in advance will allow us to get more articles published. Perhaps those who already had surgery can ask the paper to re-run their story with an update and reminder about awareness day.
4) can someone can write a press release to the news channels to get coverage for awareness day
5) we get someone to create a very nice postcard that we all can print from our home at our expense on card stock. Then we each pay for the postage to send the cards to all of our friends and families. Perhaps we can ask our family and friends to donate money to us that we can then donate to this board...
6) I need a Cushing's bumper sticker! I know there are some for sale on the store site, but I was wondering if we can get some heads on this project to get something really catchy. I would put one on my card if we could get a really cool design going... any graphic artists wanna take this up?
7) I love the radio blog shows. I think they are so great. Perhaps we can add that icon to all of our Myspace, Facebook, and personal websites. Do we have an icon that we can post to get people to this site?
8) Have people set up care pages to keep friends and family informed about all the tests, doctors appts and then following us through surgery and post op. I have over 65 people subscribing to my care page, and I am confident that those 65 people didn't know anything about Cushing's until I told them about it. If we inform little circles of 50 all around the US and world, then we will be doing a great job increasing awareness. It is free, and I love mine. I control the tone of the site, and no one talks back to me there!
9). What can we do in the medical community? I'd like to see us patients doing more to lead the doctors down the proper path. ----- Do we get a booth at a national endocrinologist conference and pass out information we want them to know, with Cushies staffing the booth? ----- Do we develop a pamphlet specifically for doctors? ----- Do we start a partnership with the national association of endocrinologists (not sure if this really exists, but you know what I mean) and work together to get more research done on Cyclic Cushing's by offering ourselves up as research participants?
10) Perhaps we contact every Women's health magazine on the market and submit some articles in February for consideration of their April magazine.
11) Perhaps we buy the google ads based on key words that appears in email. The links pop up on the right side bar while people read their gmail or other online email. If the person says ponch, fat, or other key words, then the side bar will give a link to this site.
12) We can distribute DVDs of Kate's show and the two mystery diagnosis shows (Sam and Sharmyn) to doctors and endos? To new Cushies? This will take some money for DVDs and postage, but if we focus on raising some money, then we can allocated funds to these worthwhile expenses. Now, I am not sure if we need permission from Mystery Diagnosis or Nat Geo for that, but someone can take this project and get all the details.
I'd like to see us set up a goal-driven campaign for Cushing's Awareness Day. This will really help motivate us into seeing how much interest and good we are generating as a group.
# of newspaper articles submitted
# of newspaper articles publised
# of magazine articles submitted
# of magazine articles published
# of dollars raised
# of dollars allocated to outreach (keyword ads in gmail and others, etc)
# of carepages set up
# of care page followers (in friends and family.. I have 65 already) etc.
If we each decide to lead a project to get all of this taken care of, we could be in a very good position to launch a really big Cushing's Day Awareness in April. I am really looking forward to seeing all the creativity that exists of the minds of my brilliant Cushie friends!
So, please, if you could take moment to add suggestions and brain storm here. The list I came up with is right off the time of my head, as I have no knowledge of what's been done before. Please take the list as simple suggestions in an effort to see how many 'stick' and how many we can tweak to produce a great product.
* Follow Jayne's Lead. She writes:
Of course, I'll be supporting the day and writing letters and emails and making phone calls. I hope to find us a celebrity ribbon wearer.
Something else I am working on is national TV recognition with the major networks and National publications. You can email them as well on their "contact us" info. Contact the hosts of the show and the producers to mention April 8th and Cushing's Awareness.
I am going to find out information on getting money (grant) to publish magazine adds/articles for the April editions, if not this year then for next year. I know they are probably being printed, but I just thought of this idea. My local paper will run a small 2x3 ad for starting at $300. I want the whole page! I thought about having a yard sale to raise money to put in an ad, but doubt that I'd make enough. Oh Well!
Something else I thought about is getting a chain pharmacy to post cushings info for that week prior to the 8th. Medical school journal/papers can also be contacted. I know I must have emails over 100 doctors last year on the 7th (once I know that it had passed). I'll be setting up a booth at the women's Forum again this year. I hope to set up at some health expo's and at the local Hospital or at least make/pass out flyers.
* Wear Cushing's Bracelets or T-Shirts to promote Cushing's Awareness. Cushing's Awareness T-Shirts and other products are available here: Cushie GiftStore.
* Post your ideas and what you have done here: http://cushings.invisionzone.com/index.php?showforum=134
- Category: Cushing's
- Published: 16 September 2013
- Last Updated: 16 September 2013
- Hits: 633
J Neurosurg. 2002 Jul;97(1):231-4.
A 23-year-old patient who was examined in 1910 by Harvey Cushing triggered his lifelong interest in the syndrome that bears his name. "Minnie G.," as she became historically known, presented with a "...syndrome of painful obesity, hypertrichosis, and amenorrhea with overdevelopment of secondary sexual characteristics accompanying a low grade of hydrocephalus and increased cerebral tension." This case stimulated Harvey Cushing's inquisitive mind and sparked an interest that 20 years later culminated in his seminal report, "The basophil adenomas of the pituitary gland and their clinical manifestations (pituitary basophilism)." In this classic work, Cushing reported in detail the cases of two patients encountered from his own practice and 10 similar cases collected from the literature. Minnie G. was the first case that Cushing reported. The clinical course of that case is briefly reviewed in this article.