Showing posts with label addison's. Show all posts
Showing posts with label addison's. Show all posts

Sunday, March 19, 2017

Canines and Cortisol





These Dogs Save Lives By Smelling People's Breath


MAY 08, 2014

"The fact that dogs can sniff out cancer is pretty miraculous, but that’s not the only disease canines know how to catch with their incredible olfactory abilities. Medical detection dogs -- who have been trained to sense the symptoms of a range of illnesses -- perform a unique service unlike the typical assistance dog, alerting their owners to physical problems that might otherwise go unnoticed. Thanks to the work of Claire Guest, a doctor who founded the UK-based charity Medical Detection Dogs, dozens of lives have been saved (and improved) because of disease-sniffing dogs."




Tuxie and Moxie train with Service Dog Express. www.servicedogexpress.com

keywords: service dog, Team Tux, medical alert, cortisol detection

New Service Dog!!

Hey everyone. I have some very exciting news!

Today my family got a service dog, Tux. He will be trained to detect cortisol for me and blood sugar for my husband who is a type 1 diabetic.

Follow along this new journey. Go like our Facebook page, called Fight Cushing's with Moxie.

And stay tuned, because April is Cushing's Awareness Month, and my 10th anniversary with Cushing's.  Lots of new stories coming up.

-Moxie

key words: service dog, Team Tux, medical alert, cortisol detection

Wednesday, April 6, 2016

It's Cushing's and Adrenal Insufficiency Awareness Month!

Day 1: It's Cushing's and Adrenal Insufficiency Awareness Month

772,998 page views.

WOW!
2016 not 2015. Mistake from a Cushie Mind.

I can easily say that when I started this blog eight years ago that I had no idea how far my typed words would go. At the time, it was my little place to put down my knowledge about a disease that plagued me but also a space to share my frustration when I didn't have anywhere else to put it.

I look back at the 510 posts I have made, and I have mixed emotions.
  
I stand proud that I have a collection of myself that I can share with all of those who seek understanding and assistance tackling a monster of a disease as well as a medical community that claims to have never encountered that beast before.

I am happy that my work has helped so many people that my eyes overfill with joy when an email (moxiemelissa atsign gmail dot com) comes through thanking me for maintaining this blog and saving a life.

I feel accomplished that I put so much work into a blog even when I wasn't feeling well. I posted many times from my iphone because sitting upright hurt my back and joints too much. I often lost sleep and time with my family so that I put up content in an never-sufficient-effort to save people from this destructive disease. I felt a huge responsibility to keep posting. 


Among these many posts, I can't help but notice all that I didn't say. I see gaping holes of my life story that I never posted here.  

  • I was too sick to type.
  • I was too disappointed to share.
  • I was not with it enough to formulate sentences and cognitively too confused to make sense of lab results and doctors appointments.
  • I didn't know what to do to cure this disease or even help myself. Many times, I was just too hopeless to share. 

Putting the disappointment I was facing right here on this page was so overwhelming that I just couldn't do it. If I wrote it down, it would really be as bad as it was when it all swirled around my mind.  In those times, I remained silent. My social anxiety heightened, and I clammed up. I tried to scrape together a life with whatever leftover energy I had left after the grueling fatigue -- I can assure you that there wasn't much left. I would try to forget Cushing's and I got caught up with the daily rhythm of school for my child, work for my husband, cleaning and cooking and sleeping. Every day I knew that anything expected of me other than sleeping was too much for me to handle.  Cleaning and cooking just never seemed to happen. Cushing's rang in my ears, literally, thanks tinnitus common with pituitary tumors, and reminded me every day what I had and what I tried to escape. Endless doctor appointments, scans, lab work, and daily medicine never let me forget that I was in the middle of a war against my own body.

**************


This isn't the most uplifting start to a month of awareness, but it's a start nonetheless.

My goal simply is to finish the awareness challenge, because there were years in the past when I just couldn't. I have no idea what I will articles, opinions, or stories I will share in the coming 30 days. I hope you stick around to see what happens!

Thursday, February 18, 2016

Wow! Updates to Addison's Owners Manual





Hi friends! I'm still alive and kicking!

I have so much exciting news to share with you, and I must share things one at a time. Here is today's gem.

I'm helping a friend prepare herself and family for her upcoming bilateral adrenalectomy (BLA) surgery in just six days. There is a lot of getting ready that must occur prior to ridding our bodies' of those pesky adrenal glands. 

The most comprehensive reading material I've found to help us sort out these details is the Addison's Disease Owners Manual, developed by a patient group in the U.K. Without a doubt, it is my go-to source for my questions post BLA (because I still haven't memorized it). Without hesitation, I share this resource with every Cushing's patient who must understand the complex process of replacing cortisol to stave off secondary adrenal insufficiency after pituitary surgery and primary adrenal insufficiency after removing both adrenal glands (BLA).

The indispensable document published in 2000 now has supplement pieces dated November 2015, addressing what the medical community and patients have shared in the last decade and a half. 

This is such good news that I'm writing this blog post at 3:00 am while lying flat on my back typing on my iPhone because I had to tell you about it right now, without delay!

Here is the link to see the original 2000 owners manual (officially called 
Living with Addison's disease  an owner's manual for individuals with the condition) and be sure not to miss the new 2015 documents that are now hyperlinked below that.


In the words of my dearest departed friend Kate, ONWARD.

Wednesday, May 4, 2011

Addison's Disease Poses Risks To Patients

I am so happy to see this article.  Addison's is the opposite of Cushing's. Addison's results from low cortisol levels, and Cushing's results from high cortisol.  When a Cushing's patient has a pituitary tumor removed, s/he can suffer from Addison's while the body's hypothalamus-pituitary-adrenal axis regulates itself again.  Also, a Cushing's patient who will not stop producing cortisol ultimately has to remove both adrenal glands in order to ultimate stop all cortisol production.  This makes the Cushing's patient an Addison's patient for the rest of his/her life.  These diseases are inextricably linked, and I am glad that doctors are realizing how life threatening cortisol can be. Patients know it.  European doctors know it. Let's hope US doctors will learn quickly, too.  ~m

Greater Awareness Needed On Risks That Addison's Disease Poses To Patients

Main Category: Endocrinology
Also Included In: Infectious Diseases / Bacteria / Viruses
Article Date: 03 May 2011 - 0:00 PDT
http://www.medicalnewstoday.com/articles/223926.php

Two new studies presented at the European Congress of Endocrinology in Rotterdam show the possible dangers facing patients with Addison's disease are higher than previously thought. The new research shows that Addison's patients, who have low levels of cortisol produced by the adrenal glands, are more likely to get infections which may provoke life-threatening adrenal crises.

Addison's disease is caused by low levels of the hormone cortisol, produced by the adrenal glands. Without treatment, the condition can be fatal. Patients with Addison's disease can suffer a range of symptoms, including fatigue, dizziness, weight loss, muscle weakness, mood changes and the darkening of regions of the skin if they don't receive treatment. The most famous Addison's disease sufferer was John F Kennedy, but it is a comparatively rare condition, affecting about 1 person in 15,000.

Dr Stefanie Hahner, working at University of Würzburg, Germany, looked at the incidence of adrenal crisis in 472 German patients with Addison's disease. An adrenal crisis is a potentially life-threatening condition which occurs when cortisol levels fall dangerously low, requiring an immediate injection of hydrocortisone. Dr Hahner found that 62 of the patients had an adrenal crisis over the two-year period of the prospective study, with almost two-thirds of those needing to be hospitalised and 9.5% being treated in intensive care. Two patients died from adrenal crises during the study. The study also found that many patients were unprepared to deal with the threat to life presented by crises and further patient education programmes may be warranted.

Researcher Dr Stefanie Hahner said:

"The number of adrenal crises was higher than we expected from previous studies. Infectious disease provoked 39% of the crises, with psychological stress also causing problems. Ninety-five percent of the patients were aware of the dangers of an adrenal crisis, but only 28% had the emergency injection set. This shows that these crises are largely caused by infectious diseases and stress, but also that patients need to be better prepared to respond to the crises when they arise and that infectious disease has to be treated early and aggressively in this patient group."

In another study presented at the European Congress of Endocrinology from the University of Utrecht, The Netherlands, Dr Lisanne Smans showed that patients with Addison's disease were more at risk of suffering infections than the rest of the population.

She identified 390 Addison's patients from pharmacy records and compared the risk of infections and hospital admissions. Dr Smans found that the risk of infectious disease was 1.5 times that of a control population, (overall incidence rate of 59.2/100 person-years). In addition, Addison's patients were significantly more likely to be hospitalised for infectious disease than control groups (3.8/100 person years for Addison's patients, versus 0.8/100 person years for control groups).

Researcher Dr Lisanne Smans commented:

"We need to raise awareness amongst doctors and patients of the risk of infections in Addison's patients compared to the general population. We now want to move on to see whether influenza vaccinations can help this patient group."

Commenting on the two papers, Professor Peter Trainer, Chair of the European Congress of Endocrinology Programme Organising Committee, said:

"These studies reinforce our knowledge of the risks that infections pose to patients with Addison's disease and serious consequences that can arise. We need to look at ways of making both the medical community and patients more aware of the appropriate medical action needed to treat an adrenal crisis. This really is a case where quick action can save lives. All patients with Addison's disease should carry an emergency kit containing a hydrocortisone injection that can be given immediately if they fall ill."

Sources: European Society of Endocrinology, AlphaGalileo Foundation.

Sunday, January 17, 2010

HOW WOULD IT FEEL TO HAVE ADDISON'S: Wondering about life after a BLA

I have mentioned that I am facing a Cushing's reoccurrence. I have to make the difficult decision: try a second pituitary surgery or go straight to BLA, or bilateral adrenalectomy.

Fellow Cushie Gina posted Living with Addison's Disease: An Owner's Manual for Individuals with this Disease, and I wanted to share it. You may also download the owner's manual in pdf format, too.

I haven't read this yet, but I've downloaded it on my iPhone and plan to read it all! I will return and post about how this compares to the patients' experiences we read about on the Cushing's Help and Support message boards. Knowing what I know about Gina, I bet it will be a good read.

~melissa

Tuesday, June 9, 2009

JFK HAD ADRENAL TROUBLE, TOO!

During our research for Cushing's disease and its post-op counterpart Addison's disease, Jonathan and I have turned the internet upside looking for stuff. Reading reading reading. This was one very interesting historical fact I didn't know.

President John F. Kennedy suffered from Addison's disease, or adrenal insufficiency. The John F. Kennedy Presidential Library includes a four-page summary of his condition and how he handled it as he ran several campaigns.

As an aside, we have been doing family research on ancestry.com. I found a fourth cousin who traced our shared side of the family to the Kennedys. My grandmother and Rose Fitzgerald Kennedy are 8th cousins, and JFK Jr. and I are/were 10th cousins.

Perhaps adrenal issues run in our family....?