This Survey is to gather information for the Adrenal Insufficiency Awareness Organization's grant project to create educational materials for ER personnel.
The survey is for those of you who have been to the ER during an impending or full blown Adrenal Crisis. (you may fill it out for a child or yourself)
Your help is appreciated!
At the end of the survey you will have the chance to enter for a chance to win an Adrenal Insufficiency Awareness Pin.
https://www.surveymonkey.com/
Sunday, June 23, 2013
Sunday, June 23, 2013
Anatomy of the adrenal glands:
Adrenal glands, which are also called suprarenal glands, are small, triangular glands located on top of both kidneys. An adrenal gland is made of two parts: the outer region is called the adrenal cortex and the inner region is called the adrenal medulla.
Function of the adrenal glands:
The adrenal glands work interactively with the hypothalamus and pituitary gland in the following process:
- the hypothalamus produces corticotropin-releasing hormones, which stimulate the pituitary gland.
- the pituitary gland, in turn, produces corticotropin hormones, which stimulate the adrenal glands to produce corticosteroid hormones.
Both parts of the adrenal glands -- the adrenal cortex and the adrenal medulla -- perform very separate functions.
What is the adrenal cortex?
The adrenal cortex, the outer portion of the adrenal gland, secretes hormones that have an effect on the body's metabolism, on chemicals in the blood, and on certain body characteristics. The adrenal cortex secretes corticosteroids and other hormones directly into the bloodstream. The hormones produced by the adrenal cortex include:
- corticosteroid hormones
- hydrocortisone hormone - this hormone, also known as cortisol, controls the body's use of fats, proteins, and carbohydrates.
- corticosterone - this hormone, together with hydrocortisone hormones, suppresses inflammatory reactions in the body and also affects the immune system.
- aldosterone hormone - this hormone inhibits the level of sodium excreted into the urine, maintaining blood volume and blood pressure.
- androgenic steroids (androgen hormones) - these hormones have minimal effect on the development of male characteristics.
What is the adrenal medulla?
The adrenal medulla, the inner part of the adrenal gland, is not essential to life, but helps a person in coping with physical and emotional stress. The adrenal medulla secretes the following hormones:
- epinephrine (also called adrenaline) - this hormone increases the heart rate and force of heart contractions, facilitates blood flow to the muscles and brain, causes relaxation of smooth muscles, helps with conversion of glycogen to glucose in the liver, and other activities.
- norepinephrine (also called noradrenaline) - this hormone has little effect on smooth muscle, metabolic processes, and cardiac output, but has strong vasoconstrictive effects, thus increasing blood pressure.
Saturday, May 11, 2013
Help us strengthen the rare disease community's voice on Capitol Hill! Please take 3 minutes to ask your Member of Congress to join the Rare Disease Caucus at http://bit.ly/RareAlert.
It's easy - the Action Center has a draft letter that will automatically be sent to your Member of Congress - just put in your name and address & click send. We also encourage you to personalize the letter to share information about your specific disease. If your Congress Member is already on the Caucus, the letter will automatically populate as a thank you letter instead - these are just as important to send!
It can take up to 10 letters from constituents for a Member to respond so please share this Action Alert with your friends, family & colleagues. Join our Facebook event & invite your friends: http://on.fb.me/17Mlpjg
The Rare Disease Congressional Caucus will help bring public and Congressional awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry, and create opportunities to address roadblocks in access to and development of crucial treatments. The Caucus will give a permanent voice to the rare disease community on Capitol Hill. Working together, we can find solutions that turn hope into treatments.
Friday, March 29, 2013
Journal of Clinical Endocrinology and Metabolism, 03/28/2013 Clinical Article
Dekkers O.M. et al.– To examine the risks for mortality, cardiovascular disease, fractures, peptic ulcers, and infections in CS patients before and after treatment.Cushing’s syndrome (CS) is associated with hypercoagulability, insulin resistance, hypertension, bone loss, and immunosuppression. To date, no adequately large cohort study has been performed to assess the multisystem effects of CS. It was concluded that despite the apparently benign character of the disease, CS is associated with clearly increased mortality and multisystem morbidity, even before diagnosis and treatment.
Methods
- The study used Cox–regression, and computed hazard ratios (HR) with 95% confidence intervals (95% CI).
- Morbidity was investigated in the three years before diagnosis; morbidity and mortality was assessed during complete follow–up after diagnosis and treatment.
Results
- 343 CS patients and 34,300 controls were included. Mortality was twice as high in CS patients (HR 2.3, 95%CI 1.8–2.9) compared with controls.
- Patients with CS were at increased risk for venous thromboembolism (HR 2.6, 95%CI 1.5–4.7), myocardial infarction (HR 3.7, 95%CI 2.4–5.5), stroke (HR 2.0, 95%CI 1.3–3.2), peptic ulcers (HR 2.0, 95%CI 1.1–3.6), fractures (HR 1.4, 95%CI 1.0–1.9), and infections (HR 4.9, 95%CI 3.7–6.4).
- This increased multi–morbidity risk was present before diagnosis. Mortality and risk of myocardial infarction remained elevated during long–term follow–up.
- Mortality and risks for AMI, VTE, stroke and infections were similarly increased in adrenal and pituitary CS.
From MDLinx
Thursday, March 21, 2013
Cushie bloggers - who would like to share your post on April 8 (Cushing's Awareness Day) with our friends at Adrenal Insufficiency United, on their blog?
Also, they are interested in sharing others of our posts from April. Please let me know if I have your permission to share your blog post(s) with them. I won't without your permission.
Thanks!
Saturday, March 16, 2013
Do you blog? Want to get started?
Since April 8 is Cushing's Awareness Day, several people got their heads together to create the Second Annual Cushing's Awareness Blogging Challenge.
All you have to do is blog about something Cushing's related for the 30 days of April.
Robin designed this year's version of our "official logo" to put on your blogs.
If your blog wants you to upload an image from your desktop, right-click on the image above and choose "save-as". Remember where you saved it to!
To link to the image with the yellow border, use this URL: http://www.cushings-help.com/images/challenge-2013b.jpg
To link to the image without a border, use this URL: http://www.cushings-help.com/images/challenge-2013nb.jpg
In all cases, the URL for the site is http://www.cushings-help.com
Please let me know the URL to your blog in the comments area of this post or and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/ )
The more people who participate, the more the word will get out about Cushing's.
Suggested topics - or add your own!
In what ways have Cushing's made you a better person?
What have you learned about the medical community since you have become sick?
If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients?
What would you tell the friends and family of another Cushing's patient in order to garner more emotional support for your friend?
Challenges with Cushing's? How have you overcome challenges? Stuff like that.
I have Cushing's Disease....(personal synopsis)
How I found out I have Cushing's
What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
My challenges with Cushing's
Overcoming challenges with Cushing's (could include any challenges)
If I could speak to an endocrinologist organization, I would tell them...
. What would I tell others trying to be diagnosed? What would I tell families of those who are sick with Cushing's?
Treatments I've gone through to try to be cured/treatments I may have to go through to be cured.
What will happen if I'm not cured?
I write about my health because...
10 Things I Couldn’t Live Without.
My Dream Day.
What I learned the hard way
Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
Health Madlib Poem. Go to http://languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you.
The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
5 Challenges and 5 Small Victories.
The First Time I...
Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
How much money have you spent on Cushing's, or, How did Cushing's impact your life financially?
Why do you think Cushing's may not be as rare as doctors believe?
What is your theory about what causes Cushing's?
How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been?
What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals? What new goals did Cushing's bring to you?
How do you cope?
What do you do to improve your quality of life as you fight Cushing's?
Your thoughts...?
In what ways have Cushing's made you a better person?
What have you learned about the medical community since you have become sick?
If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients?
What would you tell the friends and family of another Cushing's patient in order to garner more emotional support for your friend?
Challenges with Cushing's? How have you overcome challenges? Stuff like that.
I have Cushing's Disease....(personal synopsis)
How I found out I have Cushing's
What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
My challenges with Cushing's
Overcoming challenges with Cushing's (could include any challenges)
If I could speak to an endocrinologist organization, I would tell them...
. What would I tell others trying to be diagnosed? What would I tell families of those who are sick with Cushing's?
Treatments I've gone through to try to be cured/treatments I may have to go through to be cured.
What will happen if I'm not cured?
I write about my health because...
10 Things I Couldn’t Live Without.
My Dream Day.
What I learned the hard way
Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
Health Madlib Poem. Go to http://languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you.
The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
5 Challenges and 5 Small Victories.
The First Time I...
Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
How much money have you spent on Cushing's, or, How did Cushing's impact your life financially?
Why do you think Cushing's may not be as rare as doctors believe?
What is your theory about what causes Cushing's?
How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been?
What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals? What new goals did Cushing's bring to you?
How do you cope?
What do you do to improve your quality of life as you fight Cushing's?
Your thoughts...?
Thursday, December 06, 2012
Global Genes | RARE Project would like your voice to be heard!
Share your home videos!
We are currently looking for your home videos that illustrate what life is like for rare disease patients and caregivers on this complex and often emotional journey. This could be an assortment of moments that you’ve captured on your phone, a camera, or a digital recording device. We want the key moments, the most beautiful, personal moments that represent not only the diseases, but you and your child(ren) as well.
A few examples of what we are looking for in these clips:
| Births | In Pain | Overcoming |
| Birthdays | Sadness | Happiness |
| Hospital Visits | Loss | Laughter |
| Medicines | Struggle | Important Events |
| At Play | Tears | Family |
Be creative, think outside the box. Look for clips that are shot well, with nice light. Give us variety! Old footage, new footage, maybe even something your child has shot. We want personal, private moments. That is what will send the strongest message.
What are we going to do with this?
We are working with an award-winning filmmaking team to select submissions that will be compiled together to create a visual storyline of the years of your ongoing journey. This is your chance to share the moments that you see and experience with a global audience.
This is your moment to be heard.
More information at http://globalgenes.org/rare-video-submission-form/
Thursday, December 06, 2012
Cushing’s syndrome (pronounced KOOSH-ingz SIN-drohm) is a condition that occurs when a person’s body tissues are exposed over time to too much of the hormone cortisol (pronouncedKAWR-tuh-sawl). The syndrome can be caused by taking certain medicines or, less commonly, it can be caused by noncancerous or cancerous tumors. Cushing’s syndrome includes a range of symptoms, but they can be treated and, in most cases, the syndrome can be cured. The NICHD is one of the many federal agencies that support and conduct research on the causes of Cushing’s syndrome, detection of its symptoms as soon as possible, and development of improved treatments.
For more information about this topic, select the Condition Information, Research Information, Clinical Trials, or Resources and Publications link in the menu on the left.
Fast Facts
Common Name
- Cushing's syndrome
Scientific Name
- Hyperadrenocorticism (pronounced HAHY-per-uh-dree-noh-KAWR-ti-siz-uhm)
- Hypercortisolism (pronounced HAHY-per-KAWR-ti-sol-iz-uhm)
Causes
The most common cause of Cushing’s syndrome is taking medication that contains the hormone cortisol. This leaves the body with more cortisol than it would normally contain from the natural production of cortisol.1 Less commonly, a cancerous or noncancerous tumor in the body can cause too much cortisol production.2
Number of People Affected
Among 1 million people, two or three will develop endogenous (non-medicine-related) Cushing’s syndrome each year in the United States.3 Women are three times more likely than men to have the condition.4
Common Symptoms
The symptoms of Cushing’s syndrome vary, especially in mild cases, but patients may have some or most of the following1:
- Upper-body obesity, with thin arms and legs
- A round, red face
- Skin problems, such as acne, reddish-blue streaks, or easy bruising
- Muscle and bone weakness, including backache
- Fat that collects between the shoulders
- Poor growth in children5
Common Treatments
In most cases Cushing’s syndrome can be cured. The treatment depends on what is causing the excess cortisol in the body.6,7
Cushing’s syndrome can be treated by the following:
- Medication. If medication is to blame, a health care provider can reduce the dose or change the type of drug.
- Overproduction. If the body is making too much cortisol because of a tumor, treatments may include oral medication, surgery, radiation, or a combination of these approaches.
- Stewart P. M., & Krone, N. P. (2011). The adrenal cortex. In Kronenberg, H. M., Shlomo, M., Polonsky, K. S., & Larsen, P. R. (Eds.). Williams textbook of endocrinology (12th ed.) (chap. 15). Philadelphia, PA: Saunders Elsevier. [top]
- Nieman, L. K., & Ilias, I. (2005) Evaluation and treatment of Cushing’s syndrome. Journal of American Medicine, 118(12), 1340-1346. PMID 16378774. [top]
- Lindholm, J., Juul, S., Jørgensen, J. O. L, Astrup, J., Bjerre, P., Feldt-Rasmussen, U., et al. (2001). Incidence and late prognosis of Cushing’s syndrome: A population-based study. Journal of Clinical Endocrinology and Metabolism, 86(1), 117-123. PMID 11231987. [top]
- Steffensen, C., Bak, A. M., Rubeck, K. Z., & Jørgensen, J. O. (2010). Epidemiology of Cushing’s syndrome. Neuroendocrinology, 92(Suppl 1), 1-5. PMID 20829610. [top]
- Batista, D. L., Riar, J., Keil, M., & Stratakis, C.A. (2007). Diagnostic tests for children who are referred for the investigation of Cushing syndrome. Pediatrics, 120(3), e575-e586. [top]
- Nieman, L. K., Biller, B. M. K., Findling, J. W., Newell-Price, J., Savage, M. O., et al. (2008). The diagnosis of Cushing’s syndrome: An Endocrine Society clinical practice guideline. Retrieved April 8, 2012, fromhttp://www.endo-society.org/guidelines/final/upload/Cushings_Guideline.pdf (PDF - 510 KB). [top]
- Boscaro, M., & Arnaldi, G. (2009). Approach to the patient with possible Cushing’s syndrome. Journal of Clinical Endocrinology and Metabolism, 94(9), 3121. [top]
Last Updated Date: 11/30/2012
Last Reviewed Date: 11/30/2012
Last Reviewed Date: 11/30/2012
Thursday, November 29, 2012
Dates:
Friday, April 19, 2013 - Registration and exhibits-4 PM to 9 PM
Saturday, April 20, 2013 - Educational segments
Sunday, April 21, 2013 – Educational Segments
Monday, April 22, 2013 – Departure or visiting sites of Las Vegas
Registration: $155 for members $190 for non-members (includes 1 yr membership)
Registration fee includes: Thursday exhibits and refreshments, Friday continental breakfast, and lunch and Saturday continental breakfast and lunch. An optional dinner will be held on Friday night for $25.00 per person.
For additional attendees in your family there will be no registration fee but a $75 charge for inclusion of the segments and meals. (optional dinner on Friday night not included in the $75 fee)
Accommodations:
Tuscany Suites & Casino (Just off the Las Vegas Strip)
255 East Flamingo Rd
Las Vegas, NV
Guest room costs:
Friday and Saturday $105 per guestroom, single or double occupancy ($117.60 w/tax)
Sunday thru Thursday $65 per guestroom, single or double occupancy ($72.80 w/tax)
Reservations made after March 20, 2013 at noon will be charged the prevailing room rate if accommodations are available. To book your room you must call Tuscany Room Reservations, 877-887-2261 and ask for MAGIC Foundation group rates. You will be required to provide a major credit card for the first night’s room and tax deposit, which will be charged in order to guarantee accommodations.
Saturday, November 24, 2012
Koki Mise, Yoshifumi Ubara, Keiichi Sumida, Rikako Hiramatsu, Eiko Hasegawa, Masayuki Yamanouchi, Noriko Hayami, Tatsuya Suwabe, Junichi Hoshino, Naoki Sawa, Masaji Hashimoto, Takeshi Fujii, Hironobu Sasano and Kenmei Takaichi
- Author Affiliations
Nephrology Center (K.M., Y.U., K.S., R.H., E.H., M.Y., N.H., T.S., J.H., N.S., K.T.), Surgical Gastroenterology (M.H.), Pathology (T.F.), and Okinaka Memorial Institute for Medical Research (Y.U., K.T.), Toranomon Hospital, 1058470 Tokyo, Japan; and Department of Pathology (H.S.), Tohoku University Graduate School of Medicine, 9800872 Sendai, Japan
Address all correspondence and requests for reprints to: Koki Mise, M.D., Nephrology Center, Toranomon Hospital Kajigaya, 1-3-1, Kajigaya, Takatu-ku, Kawasaki-shi, Kanagawa-ken, 213-0015, Japan. E-mail: kokimise@yahoo.co.jp.
Abstract
Context: Hyperkalemia and weight loss are critical clinical problems for hemodialysis patients. There have been no documented reports of adrenal Cushing's syndrome with central obesity and hypokalemia in a hemodialysis patient.
Objective: The aim of the study was to report a patient with Cushing's syndrome after chronic hemodialysis, review the published literature, and discuss the significance of hypokalemia and obesity in anuric hemodialysis patients from the perspective of cortisol metabolism.
Patient: A 61-yr-old woman who had been on hemodialysis for 21 yr presented with persistent hypokalemia and central obesity. In 2002, her dry weight was 48.1 kg, but thereafter she gained weight to 60 kg.
Results: Adrenal Cushing's syndrome was diagnosed from endocrinological findings such as increased cortisol secretion without a circadian rhythm and suppression of plasma ACTH. Spironolactone was administered (25 to 50 mg/d), and her serum potassium became normal. Then, left adrenalectomy was performed by laparoscopic surgery. The resected specimen contained a well-circumscribed adrenal adenoma expressing P450c17. After surgery, hypokalemia improved gradually without medication, and her weight gain stopped.
Conclusions: This is the first documented case of adrenal Cushing's syndrome in a patient on long-term hemodialysis, although several authors have reported a relation between hypokalemia and primary hyperaldosteronism in hemodialysis patients.
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