Would you be interested in a Cushing’s iPhone/iPod app?
I’ve made a mockup you can play with at http://bit.ly/91hdQw
It has the podcasts, upcoming events, latest bios, newest doctors, Cushings Tweets, blog and news/abstracts.
It’s all made – I just have to pay the site to make this live.
I don’t know if it would be worth it, though – it would cost $199.
What do you think?
Interview with Laura (LauraNG) October 29 at 9:00PM eastern
October 29 at 9:00PM eastern, Interview with Laura (LauraNG)
This interview will take place at 9:00 PM eastern – please note later time!
Laura has been struggling since 2007 with various odd things happening to her body.
In March of 2009 she was diagnosed with Hashimoto’s Disease and Hypothyroid.
Her bio contains a long list of symptoms she has and she has been misdiagnosed with Obesity, Diabetes, Kidney stones, Depression, MS, Manic/Depressive, TIA, Anxiety – stress, Not exercising enough, Not eating properly, Abusive relationship (due to bruising).
In responding to the email confirming this interview Laura wrote:
“When I started reading the bio’s of people like myself, I started to cry tears of relief that what I may have, is actually ONE real thing. I cannot tell you how happy I was to find your website and I think it is wonderful that so many people who truly understand how frustrating it is to think we are alone, are willing to put themselves out there as beacons of hope for the rest of us. I felt so strongly, that I wanted to add my bio and offer myself for interview. If I can help one person feel a little calmer while they go through this process, I am more than willing. I don’t know if I have Cushing’s but if I do, it is important to me to reach out to others because the attacks coming from the physical and mental side of this illness, deserve to be exposed and recognized. Even though I am feeling a bit humiliated, reclusive and embarassed because of what it is doing to me.”
Read Laura’s entire bio at http://www.cushie.info/index.php?option=com_content&view=article&id=413:laura-undiagnosed-bio&catid=32:bios&Itemid=68
You can listen live at http://www.blogtalkradio.com/CushingsHelp The archives are usually up about 30 minutes after the end of the show and in our podcast area of iTunes by Friday.
The Call-In number for questions or comments is (646) 200-0162.
Adrenal Crisis
Robin wrote a great blog post about Jackie and Sam dealing with Adrenal Crisis. This is a very important article that all should read. Be your own advocate!
New PDF! Managing Adrenal Insufficiency
New Podcast! Podcast: Adrenal Crisis
If left untreated, adrenal insufficiency can cause serious illness or death. But by working with their doctors and nurses, patients can learn how to manage this condition.
A Paramedic wrote on the message boards:
I’d like to add a couple things from the perspective of a Paramedic…
A lot of us are not taught about adrenal insufficiency during our education….nor do many of us (if any at all) have a protocol to administer Injectable for AI unless we are able to contact the ER doctor for permission. So…if any of you should have an AI crisis please gently nudge your paramedic to contact the receiving physician for permission to administer the medication. I know this sounds like a lot of responsibility on the part of the patient…but you have to realize that we’re taught to recognize the most common life threats and endocrine disorders (other than diabetes) most usually do not present with life threats (we all know that as cushing’s is more recognized that this will change)…and our protocols cover the most common life threats….so while we may recognize that you are hypotensive and need fluids (IV) and are sweaty, nauseated, decreased level of responsiveness etc…we are not equipped to deal with the actual cause unless you help educate us….
Also…please don’t get angry with us….if we are having problems understanding…just gently insist that a call be made to your doctor or the receiving ED (usually not feasible for us to call your doctor since they do not come to the phone for just anybody but if you have access to them, as many cushies do, it would be great to talk to them)…
Paramedicine is evolving….someday soon, hopefully, our education will include more diagnostic skills…untill just in the past 5 years or so we were NEVER to make a diagnosis at all…just treat the symptoms!!!! So there is hope out there for futher understanding of such a critical problem for those without adrenal (or asleep adrenals) glands….
The medical alert jewerly is a life-saver and we do look for it….
Be sure to print this page to carry with you.
From the NIH. This information was developed by the patient care staff of the Clinical Center to help patients with adrenal insufficiency (AI) understand their condition and how to take care of it. It explains what causes adrenal insufficiency and how it can be controlled. If left untreated, adrenal insufficiency can cause serious illness or death. But by working with their doctors and nurses, patients can learn how to manage this condition.
National Endocrine and Metabolic Diseases Information Service
6 Information Way
Bethesda, MD 20892–3569
Phone: 1–888–828–0904
TTY: 1–866–569–1162
Fax: 1–703–738–4929
Email: endoandmeta@info.niddk.nih.gov
Internet: http://endocrine.niddk.nih.gov/
The National Endocrine and Metabolic Diseases Information Service is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health (NIH), which is part of the U.S. Department of Health and Human Services.
The NIDDK conducts and supports biomedical research. As a public service the NIDDK has established information services to increase knowledge and understanding about health and disease among patients, health professionals and the public.
Publications produced by the NIDDK are carefully reviewed by both NIDDK scientists and outside experts.
This publication is not copyrighted. The NIDDK encourages users of this publication to duplicate and distribute as many copies as desired.
From http://endocrine.niddk.nih.gov/pubs/creutz/alert.htm
DebMV suggested that you should have a Medic Alert bracelet from medicalert.org
Toll free number in the USA is: by phone 7 days a week, 24 hours a day: 888-633-4298
209-668-3333 from outside the U.S.
Lorrie got this important info for us.
Alternative names:
adrenal crisis; Addisonian crisis; acute adrenal insufficiency
Definition:
An abrupt, life-threatening state caused by insufficient cortisol, a hormone produced and released by the adrenal gland.
Causes, incidence, and risk factors:
The two adrenal glands are located on top of the kidneys. They consist of the outer portion, called the cortex, and the inner portion, called the medulla. The cortex produces three types of hormones, which are called corticosteroids. The androgens and estrogens affect sexual development and reproduction. The glucocorticoids maintain glucose regulation, suppress the immune response, and provide for the response to stress (cortisol). The mineralocorticoids regulate sodium and potassium balance. These hormones are essential for life.
Acute adrenal crisis is an emergency caused by decreased cortisol. The crisis may occur in a person with Addison’s disease, or as the first sign of adrenal insufficiency. More uncommonly, it may be caused by a pituitary gland disorder. It may also be caused by sudden withdrawal of corticosteroids, removal or injury of the adrenal glands, or destruction of the pituitary gland. Risk factors are stress, trauma, surgery, or infection in a person with Addison’s disease, or injury or trauma to the adrenal glands or the pituitary gland. The incidence is 4 out of 100,000 people.
Prevention:
People who have Addison’s disease should be taught to recognize signs of potential stress that may precipitate an acute adrenal crisis (cause it to occur suddenly and unexpectedly). Most people with Addison’s disease are taught to give themselves an emergency injection of hydrocortisone in times of stress. It is important for the individual with Addison’s disease to always carry a medical identification card that states the type of medication and the proper dose needed in case of an emergency. Never omit medication. If unable to retain medication due to vomiting, notify the health care provider.
Symptoms:
- headache
- profound weakness
- fatigue
- slow, sluggish, lethargic movement
- nausea
- vomiting
- low blood pressure
- dehydration
- high fever
- chills shaking
- confusion or coma
- darkening of the skin
- rapid heart rate
- joint pain
- abdominal pain
- unintentional weight loss
- rapid respiratory rate
- unusual and excessive sweating on face and/or palms
- skin rash or lesion may be present
- flank pain
- appetite, loss
Signs and tests:
- An ACTH (cortrosyn) stimulation test shows low cortisol.
- The cortisol level is low.
- The fasting blood sugar may be low.
- The serum potassium is elevated.
- The serum sodium is decreased.
- This disease may also alter the results of the following tests:
- sodium, urine
- 17-hydroxycorticosteroids
Treatment:
In adrenal crisis, an intravenous or intramuscular injection of hydrocortisone (an injectable corticosteroid) must be given immediately. Supportive treatment of low blood pressure is usually necessary. Hospitalization is required for adequate treatment and monitoring. Low blood pressure may be treated with intravenous fluids. If infection is the cause of the crisis, antibiotic therapy is indicated.
Expectations (prognosis):
Death may occur due to overwhelming shock if early treatment is not provided.
Complications:
- shock
- coma
- seizures
Interview with MaryO
The Call-In number for questions or comments is (646) 200-0162.
Cushing’s Help Founder, MaryO
“MaryO”, Mary O’Connor is the founder and webmaster for Cushings-Help.com and related sites. She is also a Piano Teacher and web designer in northern Virginia. She started having Cushing’s symptoms in early 1983 and finally had pituitary surgery at the NIH in November, 1987, Mary is a 25+ year survivor of Cushing’s Disease.
Due to her Cushing’s experiences and the lack of websites for people with Cushing’s, Mary founded the Cushings-Help website in 2000 to help others who were dealing with the rigors of testing and surgery.
MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing’s. Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment.
Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also.
She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing’s Awareness events. She is married to Tom and has a grown son, Michael.
Intro: Hello, I have with us today Mary O’Connor, founder of the cushings dash help dot com website. Mary is a 20 plus year survivor of Cushing’s Disease. For those who do not know what Cushing’s Disease is, you may want to peruse the Cushings-help website. Briefly, it is an endocrine-related disease caused by a pituitary tumor (also called an adenoma) which causes life-threatening symptoms. Cushing’s Syndrome is a similar disease caused by an adrenal or other tumor.
MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing’s. Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment. She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing’s Awareness events. She is married to Tom and has a grown son, Michael.
Mary, I know the listeners would love to hear your story. What can you tell us about your symptoms, diagnosis, and treatment with Cushing’s?
Other Topics Discussed:
- Why did you decide to start the cushings-help website?
- What are some of the things that can be found on the site?
- What are the message boards?
- How many members are there on the boards?
- How much work is involved in keeping up the site and the boards?
- How are you doing now? What has happened since your surgery for Cushing’s?
Closing: As you can see, Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also. Please stay tuned for more stories from these survivors! For more information, visit the cushings-help website.
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Read Mary’s bio.
Listen to MaryO’s Archived Interview from January 3, 2008