Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts

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, April 2, 2015

Day 1: Cushing's Awareness Month Bloggers Challenge


Cushing's Awareness Month:
Bloggers Challenge
Day 1

Here we are again on April 1st. I join my fellow Cushies in blogging for the 30 days of April in an effort to bring awareness to our disease, Cushing's.

On March 28, 2007, I first saw the word Cushing's while researching thyroid doctors in San Antonio, Texas. Within minutes, I knew the word applied to me. I diagnosed myself with a rare disease on the Internet. I could hardly believe it, and none of the doctors believed it.

These past eight years have been filled with some of the darkest moments of my life. At the time, I wondered if I could make it through the next five minutes. Somehow, I endured the medical challenges before me. I faced disappointment and delay. I have been dismissed and dismayed. I have been tenacious and stubborn in fighting for myself, for what is right.

I admit to being stubborn, refusing to give up the fight when I know the fight is important.

Recently, I have learned to make peace with my disease. No matter what anyone says, you don't get ill and make peace immediately. Peace and uncertainty don't mix. You can't face devastation and immediately say, "Oh well. I guess this is my new normal, and it stinks. There is nothing I can do about it." No no no. That is settling for less than you deserve.

Peace comes with accepting the dire consequences of your disease, facing and befriending death as well as life, and still choosing to walk that line every day with a full heart and the stubbornness that won't let you give up or let Cushing's win.

I strive for peace.

I am 15 months post op BLA, or bilateral adrenalectomy for those with a lot of time on their hands for extra words. 

Another year has gone by. Cortisol is as much a part of my life as ever. Instead of cursing pituitary tumors for high cortisol, I scramble to take my cortisol medicine replacements three times a day. The irony is not lost on me. 

In the coming days, I will tell you more about my life after BLA, and how I navigate this stressful world with no adrenal glands. It's not easy (hint: I take a lot of naps).

I hope that you will stay tuned and learn a little more about the nuances of these cortisol-based diseases of Cushing's (too much) and Addison's (zero). In order to survive, I must understand both.

Sincerely,
Melissa

Cushing's warrior and advocate. 
Pituitary surgery for Cushing's in 06/2009 unsuccessful. 
Pit surgery for Cushing's in 04/2011 unsuccessful. 
Took ketoconazole and suffered through adrenal insufficiency for 14 months. Drug banned in European Union. I stopped postponing my life and chose to get rid of high cortisol.
BLA 12/31/2013 successful. 
I'm fighting to get my life back, and I will win.


Tuesday, April 17, 2012

Day 16: Awareness in Action

I tweeted and tagged Ashley Judd. She replied.



This one below is easier to read.


Sunday, April 1, 2012

Day 1: Cushing's on my Mind



There is no real way to explain how devastating Cushing's is to a patient unlucky enough to suffer from high cortisol. In nearly four years of blogging, I find that this word cloud I made does the best job so far. 

Click on the image to enlarge it.

Yes, it is really this bad, and isn't that so sad for me and other Cushies.
  
I can’t believe I have lived in that cloud for over 60 months now. To be a patient suffering with Cushing’s is to feel and experience all that word swirl of emotion and more. That word cloud isn’t just my disease. Cushing's is the monkey on my back that I cannot shake. Hours and days, then months and years pass without feeling better, looking better, or being better.  When the days carrying moments of relief arrive for a short surprise visit, I am pleased. Looking back, I realize the strength I have in just walking through it, never seeing any light at the end of the tunnel.  May I and the many other Cushing’s patients continue to find the strength to keep going.

Cushing's has altered who I have become, but I can't let it change who I can become anymore.

Saturday, April 9, 2011

A Glimpse of Cushings.. by the numbers!

Thanks to Beth for creating this poll for us!
 A Glimpse of Cushings.. by the numbers!
by Beth Grant on Friday, April 8, 2011 at 9:38pm

I created a web-poll about 'The Face of Cushings' and had 55 of my fellow Cushies respond anonymously. The poll is still available to respond to as well, but here's the current statistics as of April 8th, 2011 - Cushings Awareness Day!

The first number after each response is the number out of 55 people who chose each response, then it's followed by the total percentage. I did forget to include some possible responses, so the poll cannot be viewed as 100% accurate, however this should give you a better picture of what we all are dealing with on a larger scale.

Please feel free to share this so more people can see some of what we deal with and perhaps raising awareness will help other people get closer to a diagnosis and faster treatment so nobody has to suffer like I have.

Thank you to all those who responded to my poll and who help to spread the word, and of course thank you to those who help support me!

-Beth
~~~

Question 1*Have you been diagnosed with Cushings?
Yes  Yes   47   85%
No   2   4% 
Currently Testing   6   11%

Question 2*How long have you had symptoms for?
0-1 year   0   0%
1-2 years   1  2% 
2-4 years   3    5% 
4-6 years   8   15% 
6-10 years   9   16%  
10+ years   34   62%

Question 3*Were you diagnosed with:
Cushings Disease - pituitary   35   64%
Cushings Syndrome - adrenal   7   13% 
Cushings Syndrome - ectopic   0   0% 
Cushings Syndrome - cyclical   6   11% 
Cushings Syndrome - drug induced   0   0% 
Undiagnosed   7   13%

Question 4*How old were you when you first started experiencing symptoms:
15 or younger   15   27% 
16-20 years old   7   13% 
21-25 years old   9   16% 
26-35 years old   12   22% 
36-40 years old   7   13% 
41-50 years old   4   7% 
50+ years old   1   2%

Question 5*How old are you now?
15 years old or younger   0   0% 
15-20 years old   2   4% 
21-25 years old   3   5% 
26-30 years old   5   9% 
31-35 years old   10   18% 
36-40 years old   11   20% 
41-45 years old   6   11% 
46-50 years old   4   7% 
50+ years old   14   25%

Question 6*How long did it take for you to be diagnosed?
Less than 1 year   7   13% 
1-2 years   9   16% 
2-3 years   6   11% 
3-5 years   8   15% 
5-10 years   9   16% 
10+ years   8   15% 
Undiagnosed   8   15%

Question 7*How many doctors did you see before you were diagnosed?
1   5  9% 
2   2   4% 
3   4   7% 
4   7   13% 
5+   30   55% 
Undiagnosed   7   13%

Question 8*Which of the following did you get?
High blood pressure   22   40%  
Diabetes   2   4% 
Both   19   35% 
Neither   12  22%

Question 9*What symptoms have you experienced/are experiencing?
Weight Gain   55   6% 
High Blood Pressure   42   4% 
High Blood Sugar   28   3% 
Extra Hair Growth   46   5% 
Hair Loss   42   4%
Bone Loss/Broken Bones   28   3% 
Muscle Loss/Weakness   55   6% 
Fatigue   53   6% 
Loss of Menses   33   4% 
Stretch Marks   46   5% 
Flushed Red Skin   42   4% 
Buffalo Hump   47   5%
Swelling   48   5%  
Hot Flashes/Sweating   49   5% 
Sleep Disturbances   53   6% 
Vision Problems   37   4% 
Acne   34   4%
Bruising   42   4% 
Body Odor   30   3% 
Anxiety   46   5% 
Depression   44   5% 
Infertility   13   1% 
Other   21

Question 10*What do you think has been the WORST symptom you've had to deal with?
Weight Gain   26   47% 
High Blood Pressure   0   0% 
High Blood Sugar   1   2% 
Extra Hair Growth   0   0% 
Hair Loss   0   0%
Bone Loss/Broken Bones   1  2% 
Muscle Loss/Weakness   6   11% 
Fatigue   10   18% 
Loss of Menses   0   0% 
Stretch Marks   0   0% 
Flushed Red Skin   0   0% 
Buffalo Hump   0   0% 
Swelling   0   0% 
Hot Flashes/Sweating   0   0% 
Sleep Disturbances   2   4% 
Vision Problems   0   0% 
Acne   0   0% 
Bruising   0   0% 
Body Odor   0   0% 
Anxiety   1   2% 
Depression   3   5% 
Infertility   0   0% 
Other   5   9%

Question 11*How much weight did you gain?
0-50 lbs/0-22 kg   7   13% 
51-100 lbs/23-45 kg   20   36% 
101-150 lbs/46-68 kg   17   31% 
151-200 lbs/69-90 kg   8   15% 
200+ lbs/91+ kg   3   5%

Question 12*When do you get your best sleep?
Between 10pm - 6am   17   31% 
Between 6am - 2pm   23   42% 
Between 2pm - 10pm   7   13% 
None of the above I'm awake all the time!   8   15%

Question 13*Have you had any complications in other systems of your body that may or may not be Cushings related?
Oral   13   7% 
Gastrointestinal   33   19% 
Heart   19   11% 
Thyroid   28   16% 
Circulatory   14   8% 
Nervous System   11   6% 
Mental Health   28   16% 
Learning   16   9% 
Other   9   5% 
None of the Above   3   2%

Question 14*What testing did you have leading to a diagnosis of Cushings?
AM/PM cortisol blood draw   40  13% 
24hr UFC   50   16% 
10hr UFC   16   5% 
11pm/midnight saliva   33   10% 
High/Low Dex test   42   13% 
IPSS   13   4% 
ACTH Stim test   17   5% 
CRH Stim test   10   3% 
Head MRI/CT   49   16% 
Adrenal MRI/CT   26   8% 
Chest X-ray   12   4% 
Other   8   3%

Question 15*Which was the worst test you had to have?
AM/PM cortisol blood draw   3   5% 
24hr UFC   8   15% 
10hr UFC   0   0% 
11pm/midnight saliva   1   2% 
High/Low Dex test   6   11% 
IPSS   8   15% 
ACTH Stim test   0   0% 
CRH Stim test   2   4% 
Head MRI/CT   12   22% 
Adrenal MRI/CT   4   7% 
Chest X-ray   0   0%
Other   11   20%

Question 16*Are you currently:
Working   19   35% 
Going to school   3   5% 
Working AND going to school   2   4% 
Was working and had to quit   23   42% 
Was going to school and had to quit   0   0% 
Working and going to school and had to quit   2   4% 
Retired   2   4%   Never worked   4   7%

Question 17*What treatments have you had?
Unilateral adrenalectomy   4   4% 
Bilateral adrenalectomy   13   13% 
Transsphenoidal tumor removal   35   35% 
Gamma Knife Surgery or similar   4   4%
Daily radiation for a period of time   1   1% 
Ketoconazole   21   21% 
Metyrapone   2   2% 
Mitotane   0   0% 
Cabergoline   1   1% 
Cessation of steroid use   1   1% 
Homeopathic   7   7% 
Other   2   2%
Have not been treated yet   10  10%

Question 18*Were you able to be treated locally or did you have to travel?
All treatment was local   11   20% 
Some treatment local traveled for other   18   33% 
Had to travel for all treatment   18   33%
Have not been treated yet   8   15%

Question 19*Has your treatment been successful?
Yes I am in remission   18   33% 
No I am still sick   10   18% 
No I am still sick and I am testing again   4   7% 
No I have had a recurrence treated again in remission   3   5% 
No I have had a recurrence treated again still sick   9   16% 

Have not been treated yet   11   20%
 

Friday, April 8, 2011

Cushie Warriors


CUSHIE WARRIORS: MEN, WOMEN & CHILDREN WHO BATTLE CUSHING’S NUMEROUS TIMES IN HOPES OF WINNING THE WAR
Many of you only know one person with Cushing’s.  It is difficult to understand or keep up with ‘your person’ as s/he seeks treatment.  You have probably never known someone with Cushing’s before, right?  You do know, however, that ‘your person’ talks about Cushing’s a lot or is pretty darned passionate about their Cushie friends.
You see, for us, we know MANY people with Cushing’s through Cushings-help.com website. Cushing’s is a house guest who ruins our lives and won’t leave us alone. We lean on and help others even as we struggle to find our way through complicated testing, surgery (-ies), and hopefully, cures. We Cushies all find it incredibly frustrating to have hit the many walls. We see it every day: patients insulted, dismissed, and defeated.  When it happens to us, we are often rendered speechless.  When we see our fellow Cushies meet the same poor medical treatment, we become incensed.  Ultimately, we know our bodies best, and we are found to be correct. We know when we have a disease as devastating as Cushing’s.
For Cushing’s Awareness Day, we compiled this list of Cushing’s patients from all over the world who are fighting Cushing’s and seek treatment and a cure through multiple surgical procedures and even radiation. A glossary of terms is located at the bottom of the list.
Every patient wants to be understood, supported, and cared for.  We want you to know that we are one of many who suffer from this ‘rare’ albeit rarely diagnosed disease.
Today, the Cushing community stands before you, asking you to recognize us for the struggles we face and for you to be the most supportive and caring friend or family member you can be to ‘your person.’
(NOTE: This is only a sample collected through a short time on the Cushing’s messages boards. There are many, many more patients like us).

  1. Melissa, Texas.
    Pituitary surgery #1: June 2009.
    Pituitary surgery # 2: soon in April 2011.
  2. Sarah, Oregon.
    Pituitary surgery #1: Nov 2009.
    Pituitary surgery #2: March 2010.
    Pituitary Surgery #3: Sept 2010.
    BLA: April 2011.
  3. Alex B, California
    Pituitary surgery March 2008
    BLA July 2009.
  4. Krystine T, Washington
    1st failed Pituitary surgery March 1996
    2nd failed Pituitary surgery Dec 2002
    BLA Dec 2004
    3rd failed Pituitary surgery Sept 2009
    MEGA ONE DAY Radiation ZAP Aug 2010
  5. Jill, Denver, Colorado
    left adrenalectomy Nov 2006
    right adrenalectomy Feb 2008
  6. Karen, Hinesburg,Vermont
    1st Pituitary surgery in Portland OR, January 9,2006. Not successful.
    2nd Pituitary surgery in Seattle Washington July 9, 2007.
    CSF leak July 13, 2007.  I'm in remission.
  7. Christy, Oklahoma. 
    Pituitary surgery 9-2004 Oklahoma City
    BLA 11-2004 Oklahoma City
    Rest Tissue PIT 9-2006 Pittsburgh
    CSF leak repair with titanium after the last pituitary surgery and it was removed 5-2009.
  8. Beth, Winnipeg, Manitoba, Canada.
    Gamma knife
    December 2006 and again December 2008.  Still broken, and if the tumor grows more (it's been stable for a bit now), I'll likely be headed for a 3rd time!
  9. Justin K., Kansas
    Pituitary surgery, May 19, 2008.
    BLA, May 6, 2009.
  10. Jessica K., Kansas.
    Pituitary surgery, May 16, 2008.
    BLA, May 6, 2009.
  11. Bill K., Kansas.
    Pituitary surgery, August 14, 2009.
    BLA, June 2, 2010.
  12. Danielle, Massachusetts.
    Pituitary Surgery #1 Dec 16, 2009.
    Pituitary Surgery #2 February 11, 2010.
    BLA Sep 2, 2010
  13. Trisha T, Tampa FL
    Pituitary surgery 4/07
    Currently trying to avoid BLA with various meds.
  14. Cindy W, Kentucky.
    Pituitary Surgery 11-5-07
    BLA 03-07-08
    CSF Leak repair 10-28-08
  15. Lisa, Illinois.
    Pituitary Surgery 5-30-08
    BLA 11-4-09
    Still not cured.
  16. Susan G.
    Pituitary Surgery 7/07
    Cleared for 2nd pituitary surgery 10/10.
  17. Kimberly, Illinois.
    Pituitary Surgery 11-2-2009
    BLA 2-2-2011.
  18. Debra, Virginia
    Debra v. Gallbladder due to Cushings, 1/2005
    root canal due to broken tooth 8/2008
    Pituitary surgery 10/2008
    BLA  6/2010
    Sinus/leak repair 1/2011
    Surgeries offered and rejected == repair of foot muscles, lap band surgery; surgery for excess stomach acid
  19. Lisa O, Washington State
    3/25/2009-pituitary surgery
    5/13/2010-BLA
  20. April, KY.
    Unsuccessful pituitary surgery 1/15/10.
    Testing again.
  21. Elizabeth J, KY
    Pituitary Surgery 7-2-2009
    BLA Sept. 15, 2010
  22. Trisha S, Indiana
    Pituitary surgery 11/13/2008.
    Not cured - retesting.
  23. Lynne R, Oxford, England.
    Pituitary surgery April 2008
    CSF leak repairs: April 2008, May 2008, May 2008 (3 leaks in the space of 5 weeks), with meningitis as a result of the leaks.
    Issues due to pituitary gland removal: crohns disease, pernicious anaemia, life dependent on multiple medications [hydrocortisone, ddavp, thyroxine, hrt, growth hormone, colestyramine, Vit B12 injections etc, etc. ( oh, and it stole my life- and I'd quite like it back please)]
  24. Dara M, Limerick, Ireland.
    Pituitary surgery 29th June 2009
    got MRSA in sinus as a result, had surgery to remove scar tissue.
    MRSA is not for Christmas, for me it's for life xxx
  25. Philip B, New Jersey.
    Pituitary surgery at MD Anderson October 31, 2007.
    Testing for Recurrence since Jan. 2011.
    Replacing Growth hormone and Testosterone
  26. Donna, Winnipeg, Manitoba, Canada
    Pituitary surgery Aug2009.
    new tumor march 2010 but not told about it until sept2010 when it got to 9mm.
    had gamma knife nov. 2010.
    still waiting to be better. tumor has not shrunk yet
  27. Michelle, California.
    Pituitary surgery February 2009.
    BLA February 2010.
    Not cured. Testing. 2 tumors showed on MRI.
  28. Shauna N, Washougal, WA.
    Pituitary surgery 8/2/01
    BLA 2/5/02.
  29. Robin S, Salem, VA
    Pituitary surgery Dec. 14, 2006
    BLA June 16, 2010
  30. Lori, Great Neck, NY
    Diagnosed 12/1994.
    Pituitary surgery 3/1995
    Pituitary surgery 5/1997
    Pituitary surgery 7/1999
    Still sick. Possible Cyclical?
  31. Nan, New Jersey
    Pituitary Surgery, October 2010
  32. Dan, Delaware.
    Pituitary Surgery #1 August 2009.
    Pituitary Surgery #2 February 2011.
  33. Cyndie M, New Jersey
    Pituitary 1-09-2009
    Upcoming BLA 4-28-2011.
  34. Kim S., Pennsylvania
    Surgery #1 Jan 2010 positive for Acromegaly but was trying to find a cure for Cushings.
    Testing since Oct 2010 for Cushings.
  35. Kay, New Jersey
    1st & 2nd Pituitary surgery June 2008 - in remission
  36. Jenny, Iowa.
    Pituitary Surgery #1- May 2008.
    Pituitary Surgery #2- April 2009.
    Currently considering a BLA vs. pituitary surgery #3.
  37. Tanya, Buffalo, NY
    Pituitary surgery #1 - February 2010
    currently seeking re-diagnosis
  38. Denise P, Dallas,Oregon
    2003 Pituitary surgery Vanderbilt
    2004 canceled pituitary removal after screws were in (I was in pre-op) Vandy
    2004 Stereotactic Radiosurgery- Vanderbilt
    2005 Right half of Pit removed - OHSU
    2005 BLA - OHSU
  39. Cate, Georgia
    Pituitary surgery #1 and 2 -- August 2009.
    In remission.
  40. Kate, New Jersey
    Pituitary surgery #1 - Jan. 2007 (Failed)
    Pituitary surgery #2 - July 2007 (Total Pit Removal; Failed)
    CSF Leak Surgeries - Oct. 2007 (Failed; still have small leak)
    Open BLA with 18" incision - Sept. 11, 2008
    Gamma Knife Radiosurgery - Oct. 2009
    No pit, no adrenals, radiation damage to hypothalamus (cannot regulate body temp.)
  41. Pat, California
    Pituitary Surgery #1: August 2000.
    Pituitary Surgery #2 December 2007.
    Currently testing for surgery #3.
  42. Christy, New Mexico
    Pituitary surgery November 2010.
    Considering BLA
  43. Brenda, Alberta, Canada
    Pituitary surgery May, 2007
    BLA May, 2007
  44. Jamie, Washington State
    Pituitary surgery #1: March 2010.
    Pituitary surgery #2: April 2010.
  45. Melissa, Florida
    Pituitary surgery #1: March 2009.
    Pituitary surgery #2: December 2009.
    BLA to come?
  46. Vicki, Buffalo, NY
    Pituitary surgery #1: October 2009.
    Pituitary surgery # 2: April 2010.
    BLA soon to come.
  47. Gina, Georgia
    Pituitary surgery #1: March 2009.
    Bilateral Adrenalectomy: October 2009.
  48. Sherry C, Silverton OR
    1st pituitary surgery 3/2006
    2nd pit surgery 9/2006
    BLA 10/2006.
    Sick since 1999 but diagnosed in 2005.
    Tested for 1 year. Knew I had Cushing's since 2004.
    Still sick....but it's the aftermath of the damage the cortisol did to me and the steroids now.
  49. Melyssa, Colorado
    Pituitary Surgery # 1: August 2009.
    Currently testing again.
  50. Michaela, Toronto, Ontario, Canada.
    Pituitary surgery 1 -- June 2005
    Pituitary surgery 2  -- Jan 2008
    Pituitary surgery 3  -- July 2008
    BLA  -- July 2009
  51. Gisella, California
    Pituitary surgery #1: October 2009.
    Pituitary surgery #2: August 2010.
    Pituitary surgery # 3 or BLA to come.

Pituitary Adenomas

Several therapies are available to treat the ACTH-secreting pituitary adenomas of Cushing's disease. The most widely used treatment is surgical removal of the tumor, known as transsphenoidal adenomectomy. Using a special microscope and very fine instruments, the surgeon approaches the pituitary gland through a nostril or an opening made below the upper lip. Because this is an extremely delicate procedure, patients are often referred to centers specializing in this type of surgery. The success, or cure, rate of this procedure is over 80 percent when performed by a surgeon with extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results. After curative pituitary surgery, the production of ACTH drops two levels below normal. This is a natural, but temporary, drop in ACTH production, and patients are given a synthetic form of cortisol (such as hydrocortisone or prednisone). Most patients can stop this replacement therapy in less than a year.
For patients in whom transsphenoidal surgery has failed or who are not suitable candidates for surgery, radiotherapy is another possible treatment. Radiation to the pituitary gland is given over a 6-week period, with improvement occurring in 40 to 50 percent of adults and up to 80 percent of children. It may take several months or years before patients feel better from radiation treatment alone. However, the combination of radiation and the drug mitotane (Lysodren®) can help speed recovery. Mitotane suppresses cortisol production and lowers plasma and urine hormone levels. Treatment with mitotane alone can be successful in 30 to 40 percent of patients. Other drugs used alone or in combination to control the production of excess cortisol are aminoglutethimide, metyrapone, trilostane and ketoconazole. Each has its own side effects that doctors consider when prescribing therapy for individual patients.
CSF, Cerebrospinal fluid leak: A more rare, although sometimes expected, result of surgery is drainage from the nose of a clear, watery liquid called cerebrospinal fluid (CSF), which is a normal fluid that surrounds the brain. Large pituitary tumors lean up against a membrane that separates this fluid space from the nose, and a CSF leak may occur if this membrane is absent or opened during surgery. The surgeon will generally recognize a CSF leak when it occurs and will "repair" the leak by placing a small amount of abdominal fat over the leak. The patient may awake from surgery and find that it was necessary for the surgeon to place a small tube in the lower back to allow CSF to drain into a bag and help the leak to seal. The tube is placed while the patient is still under anesthesia, and it is not painful while in place. The tube (about 3 millimeters in diameter) will remain in the lower back for 3-5 days and the patient will be kept in the hospital during this period. After the tube is removed (a painless, approximately 15-second procedure), the patient usually will be able to leave the hospital later the same day with the leak sealed. In most cases, CSF leakage does not occur and the patient may expect to go home 2 to 4 days after surgery.
BLA, Bilateral Adrenalectomy: Surgical removal of both the adrenal glands.
Gamma Knife: This is a more focused radiation treatment than conventional radiation, which reduces the risk of hypopituitarism. It provides a large dose of radiation to a tumor so that when the tumor cells divide, they die. As this method depends on the rate of cell division, symptoms may persist long after the radiation treatment.
Radiotherapy, preferably with stereotactic radiation, is effective in controlling tumor growth in the majority of patients who have residual tumor after surgery.

Sunday, April 3, 2011

Fundraising Efforts

I created this ticker to show us how close we are getting to the goal of raising funds to support Cushings-Help.com.

Media_httptickerstick_dxhdw


This is my first time to raise money this way, so my methods are rudimentary.  If you decide to donate, please let me know, either by commenting below or some other way.  I will then update the ticker with the new donation so that we get an accurate reflection of our fundraising efforts.
Please consider donating $10 to keep the Cushings-Help.com's message boards up and operating free for all those who need it.
I thank all of you for your support.
~ Melissa

Saturday, July 17, 2010

Pay No Attention to the Girl Behind the Smile

I thank Christine for highlighting the struggle folks with chronic diseases face each day. Frankly, it's why I choose to stay home most of the time.

Pay no attention to the girl behind the smile (full article).
Article written by Christine Miserandino, © butyoudontlooksick.com


What can I say, It is the “secret society of the sick” and I am proud--but not lucky to be a--member.

I hate having to defend that I am a good mother, wife, daughter, sister, or friend.

It is a dizzying, exhausting dance to be two different people. I guess I have grown up a bit. I quite simply do not have the desire to act anymore for you. This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.

I am doing my best.

There are so many things I wish people knew about me but I won’t say, because you don’t ask; and when you do, you’re not truly listening.

Pay no attention to the girl behind the smile.

Sunday, June 27, 2010

Heavy health burden: Fat but not my fault

The lovely and lively Sharmyn McGraw is the founder of Hormones411.com and an omnipresent Cushing's activist.

Sharmyn's winding path to diagnosis was chronicled on the Discovery Health program Mystery Diagnosis (click to see full segment).

This past week, Sharmyn was featured in an MSNBC.com article entitled Weight gain from illness, medication spurs sudden shame.

I want to thank Sharmyn for her persistence in getting the word out there about Cushing's. Every time she shares her own journey, Sharmyn educates the public and saves sufferers. One person at a time. Thanks for all you do, Sharmyn!

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

Weight gain from illness, medication spurs sudden shame

by Joan Raymond and Jim Seida, MSNBC contributors; updated 6/23/2010


Sharmyn McGraw knows what it’s like to have a body that people envy. For most of her adult life, the 5-foot, 4-inch former flight attendant was a lean size 2. No more. McGraw, 48, now weighs 189 pounds, down from a one-time high of 250 pounds.



It’s not like McGraw stuffed her face with super-size-me burgers and fries. She’s sick. In 2000, she was diagnosed with a rare condition called Cushing’s disease, caused by a benign pituitary tumor. One of the hallmarks of Cushing’s is massive weight gain, particularly in the trunk, face and back.

Though surgery to remove the tumor was successful, McGraw still suffers with severe hormonal imbalances, making weight loss and weight maintenance difficult. And it’s those extra pounds — or more accurately, people’s perception of those extra pounds, she says — that can be as tough to deal with as any disease or treatment that causes weight gain.

McGraw knows all about indignities. She got dumped by a personal trainer after she couldn’t shed pounds fast enough. A doctor told her she could lose weight if she was locked in a closet for a week with only water to drink. Even well-meaning friends could be annoying as they told her about the latest-greatest diet.

'Fat is fat'
“I know how people look at me now, and how people looked at me when I was fit,” says McGraw, who runs a pituitary and brain tumor patient support group in Santa Monica, Calif. “The bias out there against heavy people is incredible. Having an illness doesn’t matter. In people’s eyes, fat is fat.”

In a society that value’s thinness, McGraw’s dilemma isn’t unusual. Weight bias is rampant, although women seem to experience it at lower weights. Though folks who have gained weight due to medical conditions or by taking prescribed medications like steroids that can cause weight gain are only a small fraction of the overweight and obese, they too feel the anti-fat scorn.

“You would think that illness would be somewhat protective (against bias),” says obesity researcher Marlene Schwartz, deputy director of The Rudd Center for Food Policy and Obesity at Yale University. “But (as a society) we like to assign fault. We think it’s so easy to be healthy, and therefore, not fat.”

Because obesity and all of its co-morbidities like heart disease, stroke, diabetes, some cancers, and asthma, to name a few, rack up big health care bills (according to a 2009 CDC study, America now spends as much as $147 billion annually on the direct and indirect costs of obesity) some researchers fear this bias might get worse as health care reform plays out.

“There is some evidence that shows that for whatever reason weight bias is increasing,” says obesity researcher Robert Carels of Bowling Green University in Ohio. His own research published in the journal Eating and Weight Disorders shows a “strong level of contempt” for the obese, especially among people who believe the weight is highly controllable. “There’s a feeling of why should I have to pay for them (the obese), if they can do something about their weight,” says Carels. “As a society we have a strong, pull-yourself-up-by-the-bootstrap mentality, and the overweight are the targets.”

You don’t have to tell that to Nellie Sabin, 56, of Cape Cod, Mass. About 15 years ago, Sabin developed severe migraines, which her doctor treated with a long-term course of steroids. Unfortunately, the steroids produced a massive weight gain of 100 pounds and rebound headaches that lasted about five days.

“I was a complete mess,” says Sabin, a book editor and writer. “I thought I was going to die.” The long-term steroid treatment caused Sabin to develop a hormone disturbance and she also developed severe arthritis in her back, making it difficult to exercise. “Unless you have experienced it, you can't imagine the prejudice and shame associated with being fat, even if it isn't your fault,” says the 5-foot, 10-inch Sabin, who once weighed 155 pounds but now weighs more than 300 pounds.

The good news is that Sabin has the full support of her husband and children. The bad news is that it’s tough to get respect from other people. “Everyone assumes I’m fat because I eat Snickers bars for breakfast. They also assume I’m stupid and have no willpower,” says Sabin. “At this point I would rather not have to meet people than have to explain I’m not a moron and I’m fat for medical reasons.”


Ashamed of own prejudice
Liz Gabor of Cleveland, Ohio, used to be one of those people that thought the obese were an easy target for loathing. That is until she became a self-described “fat girl,” after gaining 60 pounds in about 18 months despite eating well and exercising. The diagnosis: insulin resistance.

“I thought that was a disease that couch potatoes got, so I was embarrassed about everything, and it didn’t help that people looked at me and thought I was bingeing on chips and ice cream all night,” says Gabor, whose weight jumped from 125 pounds to 185 pounds.

Before developing a rare condition called Cushing's disease, Sharmyn McGraw, seen in 1990, was 5-feet, 4-inches and 120 pounds.

She is now taking medication to better help her body respond to insulin and to help her lose weight.

Gabor believes her “time of fatness,” is payback for her years of judging the obese. “I think weight gain, no matter what the cause, can be really complex for some people. But I think I’m even more embarrassed about the way I thought about obesity. It’s very shameful.”

That’s not to say that Gabor, McGraw and Sabin are at peace with their bodies. They want the pounds gone. And the sooner, the better. In the interim though, they are just trying to get through the day.

“I think society makes it tough for everyone to accept the way they look,” says McGraw. “When I was a size 2, I probably thought I could have had a better body. My gosh, that’s really kind of funny now.”

Joan Raymond is a freelance journalist whose work has appeared in Newsweek, the New York Times, MORE and Woman's Day.

© 2010 msnbc.com

Friday, April 23, 2010

CUSHIES SET THE RECORD STRAIGHT: Patients Become the Experts without the MD

Patients know more than most doctors do about Cushing's.

I was tickled pink to find this Google Knol page on Cushing's Disease/Syndrome and related endocrine disorders.

It is fantastic.  Why?  It is written by Robin from the Cushing's message boards, with help from the tenacious MaryO.

After testing for Cushing's for over 3 years, I learned a lot from the information posted on that page.  The best part is that everything is in one place, with lovely links to medical literature and diagrams that spell it all out so clearly. Essential for our routine tete a tetes with our dear, sweet endocrinologists.

In addition, I want to draw your attention to a new blog that Robin has created to show how Cushing's affects her life every day.  I bet you will find Robin's 365 Days with Cushing's Disease blog insightful.

I appreciate all of your inventive work, Robin and Mary.  Thank you again for everything.

~Melissa

Friday, July 17, 2009

I'M FAT, I'M FAT, I KNOW IT: Outreach to the Weight Loss Community

**
As many of you know, it is my hope that we can inform the populace about Cushing's disease and hopefully improve the quality of lives of many patients.

In that effort, I wanted to share with you a quick post I left for the owner of a weight loss message board/website. I posted it under the "suggestions to the webmaster" forum.

Today's group: carb counters. Gastric bypass and lap band patients, I am coming after you next!

~Moxie Melissa


Hello... Webmaster. I did an internet search and found this site. Thank you for all your hard work.

After many years of following a low carb diet, I have now had pituitary brain surgery to remove a benign tumor that was causing Cushing's disease. It is the cause of my uncontrolled weight gain of 75 pounds in 4 years as well as a myriad of terrible symptoms.

This quote from my blog sums it up best:

"Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never thought possible.” ~The Science of Obesity (see video link on ). This is my personal blog, and I hope to help people understand this disease and get themselves diagnosed quicker and on the road to health and happiness sooner.

Anyway, I have visited your site a few times, and I always see someone posting about the possibility of Cushing's. As the webmaster, you are in the unique position to inform people who have this disease but may not have ever heard of it... until they see a group listed under Health Groups called Cushing's on your site. One click may open their eyes to the disease that my endocrinologist said was the most difficult diagnosis to make in all of medicine.

Would you please consider it? Through my blog, people thank me for taking the time to write about my experiences. They say they would not be on the right track to diagnosis if it hadn't been for me. Some say I have saved their lives. If you create a group on your site, you could be doing the same for people.

I hope that you are willing to help. If I can help you in any way, please contact me. If you do decide to help, please drop me a quick line and let me know. I may start posting over here, too!

Monday, July 6, 2009

HEAR YE, HEAR YE: Patients Talk about Life with Cushing's

*
You can read about Cushing's. This blog and many other websites offer the text version of this devastating disease.

Hearing people who have Cushing's describe their path to diagnosis and treatment is quite emotional, as it fills in the gaps between the written word. I am amazed at how people stumble onto diagnosis after years and years of being ignored by their doctors. Many Cushies visit five to ten doctors before they even see an endocrinologist, then many go to see several "endiots"--our affectionate term for endocrinologists who don't quite understand the way Cushing's presents in today's patients--before they receive the help they deserve.

Take a listen to real Cushing's patients who describe their onset of symptoms and how they fought to get the diagnosis. For anyone fighting this disease, it is truly heartbreaking to listen to how people have struggled and triumphed over this disease. I have yet to listen to one that did not bring tears to my eyes.

To all my fellow Cushing's patients out there who have fought this disease with such determination, courage, and moxie: I salute you. I dedicate all of these efforts to you, to us.

Go to the Cushing's Help and Support website to choose the podcast format of Cushie Chats: BlogTalkRadio or iTunes.

Go directly to Cushing's on BlogTalkRadio.



*

DEATH BY CUSHING'S: Accidental death verdict on 40-year-old mum

*
It is with a heavy heart that I share this story today about an unnecessary death, due to Cushing's. I send my most sincere condolences to the Richardson family and all those affected by Marie's passing.

This just shows that often MRIs miss teeny tiny tumors. Doctors were unsure if I had a pituitary tumor, although they agreed there was a suspicious area. During surgery, my neurosurgeon easily spotted the camera-shy tumor, which measured 3 millimeters or 0.12 of an inch. That's really small to wreak such havoc on the body. Dastardly little tumor!

If you think you have to waste, you are wrong.
If you don't fight to get yourself diagnosed and treated, then who will?
If not you, then who? If not now, then when?


~Cushie Melissa
*
Accidental death verdict on 40-year-old mum

Published Date: 03 July 2009
By Garth ApThomas

A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.

Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.

A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body's hormonal system.

The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.

Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.

Contributory factors in Mrs Richardson's death had been Cushing's disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.

The court was told by Mrs Richardson's husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.

Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.

Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.

She had been given a scan involving the pituitary and there was no evidence of a tumor.

It transpired the post-mortem had found Mrs Richardson did have a tumor, which had experienced bleeding.

Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.

Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.

Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.

Legal representatives for Mrs Richardson's family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson's treatment while at the Maelor.

He said that with hindsight the only potential other avenue may have been if she had been given steroids.

But Dr Stanaway stressed he doubted this would have been successful, emphasizing Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.

Recording his verdict of accidental death Mr Gittins emphasized: "This is not an indication of responsibility, blame or judgment.
"That is not my jurisdiction.

My very sincere condolences go to the family."

Page 1 of 1

* Last Updated: 03 July 2009 8:35 AM
* Location: Wrexham

Wednesday, July 1, 2009

CARDIAC PADDLE TO THE CHEST: A Letter from the Founder of the Pituitary Network Association

*
I have found the Pituitary Network Association to be an incredibly helpful resource. For the undiagnosed, take this letter from its founder as a cardiac paddle to the chest. For the friends and family of the sick, understand the severity of this disease. It matters not whether you have heard about it before or not.


From Our Founder:

Greetings,

If you are just learning about pituitary tumors and the many associated problems and hormonal disorders let us start with a frank discussion of where you are: Pituitary Tumors, though described in some textbooks as "benign" can be very aggressive and can do irreparable harm. Some can even be lethal IF NOT PROPERLY TREATED!

Do not allow your physicians, or yourself or family to treat these tumors lightly or in a start and stop fashion. Get highly qualified professional help. As with cancer or heart disease, you need expert help, only. The last sixty years have been remarkable in pituitary endocrinology. In the 1930's for instance, Cushing's Disease was a death sentence; patients lived an average of 4.7 years after presentation of illness. In the 1950's, the five year survival rate was 50%. The cure rate for microadenomas today is approximately 90% and improving. Experts in Neurosurgery and Pituitary Endocrinology have so improved the cure rate in a mere 60 plus years that the general medical community, and certainly insurance companies and others, tend to think of Pituitary Disease the way they think of Polio. The threat is over and the scourge has left us. Sadly, with Pituitary Tumors this is not the case. Each and every patient has to be evaluated and "fought for" or the battle may be lost.

These tumors act and grow differently in every patient. A correct diagnosis and treatment plan is essential for the survival of many of us. Yes, clearly, in many they are slow growing and may cause little apparent outward damage. Regretably, many with so called "incidental" or "non-secreting" tumors often have symptoms which their physicians simply forget or are untrained to ask about. Sexual function, mental health, overall ability to function and fit in, are all vital aspects of our lives. The tumor may not "take" our life but may in fact change it to the point of lowering the patient and his or her family into a "living hell". Study, learn, seek expert help and join the PNA as we continue to bring you the REAL facts about these insidious diseases and their often fateful consequences.

We do not mean to alarm you, but in the past twelve years we have witnessed enough deaths and suffering to know with certainty that no one has the right to deceive you about the issues you face. We do not yet have ALL the facts, nor are we here to console you. We are here to inform and alert you about Pituitary and Hormonal disorders. If we help save your life and make it better, we have succeeded.

Good luck and God Bless.

Robert Knutzen, founder
Pituitary Network Association


*

Saturday, June 27, 2009

CUSHING'S DISEASE ENDS MODEL'S CAREER; SHE FINDS BETTER ONE

I have so much respect for Carol Perkins for sharing her story in Ladies Home Journal, the prominent women's magazine. That takes a lot of courage. Women are five times more likely than men to be affected by Cushing's. It is my strong belief doctors dismiss women in their 20s-50s when they present with weight problems, fatigue, headaches, etc. In addition, while they tend to go to the doctors more often than men, it seems that women are more likely to be passive in dealing with the medical community, particularly male doctors. Aren't we all taught how smart doctors are, and how they went to school for all those years, make all that money now, and therefore, they know what they are speaking about, but not us? Little ol' measly puny us? Who are we to think that we know more? It's instinct. It's guts. That's what.

Women with a rare disease are unfortunately being treated contempt and given pithy advice to exercise and lose weight. Most docs are not too subtle in their suggestions, leaving Cushies feeling demoralized, dejected, and humiliated. This must stop. Thank you, Carol, for helping us get the word out. Kudos to you.

It is important to thank the folks at Ladies Home Journal for publishing this important article. I know that with ever mention of Cushing’s disease, there will be at least one person’s life that is saved, as early diagnosis is key to Cushies making a full recovery (and cutting out unnecessary misery).

Do you want to tell LHJ thank you, too? Follow this link to post a comment on the LHJ website.You have to register, but please do it, if you have an extra moment or two. It will show them how appreciative we are. Do it for the Cushies and the ones who love us.

~Cushie Melissa


Carol Perkins' Pet Project: Home bound with a devastating illness, former fashion model Carol Perkins started designing accessories for dogs and discovered a new career.

By Jenny Miller

Originally published in Ladies' Home Journal, July 2009.

Throughout her 20s and 30s Carol Perkins lived a dream life. She traveled the world as a Ford model and appeared in magazines like Vogue and Harper's Bazaar. In her early 30s she continued modeling for clients like Victoria's Secret and started performing with magicians Penn and Teller. When she wasn't working she was out on the town, at art exhibition openings, theater events, and nightclubs. Home was a loft apartment in Manhattan. "It was a fashionable, fast-paced life," Perkins says. "Definitely glamorous."

Then she got sick. "I started getting dizzy and having severe headaches," she recalls of 1995. Even worse for her career, her weight shot up by 70 pounds. She developed a hump between her shoulders and noticed hair growth on her chin. Doctors prescribed antidepressants, weight-loss pills, and migraine medication, but nothing helped. As the bizarre symptoms intensified, Perkins could no longer work. "I was disfigured and unemployable," she says. "I kind of hunkered down and lived off my savings."

In a short time Perkins had gone from jet-setter to shut-in. Many friends, unable to deal with her illness and physical transformation, stopped coming by. "It was a really dark downward spiral," she remembers. Two things kept her from complete despair: dogs and sewing. Perkins had always loved animals, so much so that she'd once considered going to veterinary school. But her travel-heavy career had made it impossible for her to have a pet. Now homebound, she began pet-sitting for friends and neighbors. "They were my emotional support dogs," she says. "Dogs don't care if you're fat -- they love you unconditionally." Perkins also loved to sew, and she began making robes, sweaters, and dog beds as gifts for her canine guests. "There's such a joy in making something with your hands," she says. "I was really grateful to have a purpose."

A year and a half later, Perkins was finally diagnosed with Cushing's syndrome. In her case the rare illness was caused by a tumor on the pituitary gland, which made her body produce too much cortisol and led to her many strange symptoms. Two weeks later she underwent brain surgery to remove the tumor. When she awoke, "It was like a weight had been lifted," she recalls. "I decided right then that I was going to devote myself to helping animals and people."

Back home, Perkins faced a long recovery as her brain healed and her body chemistry returned to normal. But the animals continued to visit, and she kept up her crafting with a newfound purpose -- to turn her hobby into a career. An opportunity arrived sooner than expected. Just a few months after Perkins's surgery, an editor at a fashion magazine happened to see a dog bed she'd made as a gift for a neighbor's pug. The bed was featured in the magazine's May 1997 issue. Perkins had never sold any of her crafts before, but her company had launched -- whether she was ready or not. "The phones were ringing and buyers from Bloomingdale's were ordering," she says. She scrambled to fill those orders, then decided she'd better figure out how to really start a business. "I was the typical entrepreneur in that I didn't have a clue." Perkins spent most of 1998 and 1999 doing research and development, still filling orders from her kitchen table.

In 2000 she launched her company for real. She cashed in all her assets, traded New York City for Savannah, which was more affordable and closer to the textile mills she needed to work with, and opened up Harry Barker. "All dogs are hairy barkers," Perkins explains. Then she finally adopted a dog of her own, a sheltie-collie mix she named...Harry Barker.

Perkins not only found success in business but she also found love: She met her future husband, David Rawle, on a blind date and at 45 became a first-time bride, moving to Charleston to live with him. Today Perkins, 51, and Rawle, 66, share their home with Harry Barker and Josephine, a briard. Harry Barker, the company, has seven fulltime employees and operates out of a dog-friendly office in Charleston. The pet accessories for dogs (and, in more limited fashion, cats), such as collars and leashes, beds, toys, and treats, are available online at HarryBarker.com and in 3,500 stores internationally.

And Perkins didn't forget that promise she'd made to do good things for people and animals. This year the company launched a line of dog treats and toys that benefits therapy-dog programs at a nearby hospital. Many of Harry Barker's products are hand-packaged by adults with disabilities through a community partnership with the local disabilities board. And a good number of items are earth-friendly -- a recently introduced line of environmentally conscious collars and leashes is made out of recycled plastic bottles. But as gratifying as those do-good initiatives are, says Perkins, the real joy of her new career is all about the dogs. "There's just something about a wagging tail that makes me happy."

Originally published in Ladies' Home Journal, July 2009.

Friday, May 30, 2008

Cushing's featured on National Geographic Science of Obesity

“Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never imagined.”

National Geographic put together a show called The Science of Obesity. It aired in September 2007. It mainly followed a man getting gastric bypass surgery. Luckily, they did include one six-minute segment on Cushing's at the end. It features Kate, a Cushing's patient on the message boards with me, and her doctor, Dr. Thomas Friedman (http://goodhormonehealth.com/). Kate was brave to share her story with all of America. We thank her for her efforts. Over 20,000 people have viewed this segment on youtube. We hope others will see this video and get the help they need and deserve.

This is a very good segment, including detailed diagrams showing the pituitary, the production of cortisol and ACTH, and effects of too much cortisol on the body.

Sharmyn McGraw, the face of Cushing’s

Sharmyn McGraw is by far the most public face of Cushing’s. As a survivor of Cushing’s, she has made it her crusade to bring awareness to this disease. After spending seven years searching for a diagnosis, Sharmyn now spends her time educating both patients and the medical community. So many people have seen Sharmyn's story and have started testing for Cushing's as a result. We all thank her for stepping out and sharing her story. We are all very proud of her.

MYSTERY DIAGNOSIS

Sharmyn was also featured on a segment of the show Mystery Diagnosis on the Discovery Health channel. Isn't it a pretty bad sign when the disease you have is featured on a show called Mystery Diagnosis?!

Program description: "Lethal Diet. Parents deal with a son with sinus infections and unsteady feet. A woman gains weight, has oily skin, hair loss, body cramps, and irritable bowel syndrome."

The Cushing's segment airs every few weeks or so. Sharmyn's story airs about 20 minutes into the hour long show. You can set your Tivo or DVR to pick up this show. I just set mine to save 3-4 episodes, and then routinely delete the shows that do not have it listed in the program description.

YOU TUBE OFFERINGS OF SHARMYN'S MEDIA APPEARANCES
Here are some YouTube videos of some of the segments that aired about Cushing’s. You can visit her website at http://www.hormones411.org/ to view all of them.


Sharmyn McGraw on the Montel Williams show




Sharmyn McGraw on NBC News in Los Angeles



Sharmyn on news: surgery and recovery in 18 months