Home

We Have a New Bio Form!

128 Comments

We have a new form to add your own bio!

Try it out below…

 

 

Thank you for submitting your bio – sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed.

If you are planning to check the button that reads “Would you like to be considered for an interview? (Yes or No)” please be sure to read the Interview Page for information on how these interviews work.

Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing’s patients and has already been asked and answered on the Message Boards.

Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link.

Please post any questions for which you need answers on the message boards.

 

HOME | Sitemap | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Sharmyn, In the Media

Leave a comment

From 2022:

Sharmyn McGraw knows as much about pituitary disease as some doctors.

She learned about it after struggling for years with a medical mystery that began in 1993. First, she began to feel anxious. Then, she began to gain weight, and she developed a rash. Much of her hair fell out. Her eyes began to yellow and her face puffed up. Different doctors gave her different explanations. They told her she was allergic to caffeine. That she was just retaining water. That she was beginning menopause.

In the end, none of those things turned out to be true. She finally figured out that she had Cushing’s Disease, which is caused by excess production of the hormone cortisol, which, in her case, was caused by a tumor on her pituitary gland.

Listen to this episode to find out how Sharmyn got to the bottom of her medical mystery with the help of Dr. Dan Kelly, and how she uses years of knowledge to help others suffering from pituitary diseases through the support group she founded at the Pacific Neuroscience Institute.

 


From 2019:

Sharmyn, can you briefly walk us through your story – how you started and how you got to where you are today.
My story is about the best kept secret in medicine…

I went from a petite dress size 2 to an obese size 22 in just one year. I went from athletically fit to barely able to walk upstairs. One of my closest girlfriends was a former Miss Universe and actor in Hollywood; we looked like sisters. We often hung out socially with those in the entertainment biz where anorexia is a compliment—not a disease.

But in 1993, at the age of thirty-one, I started to gain weight and lots of it. I ate a very healthy diet; I worked out five to seven days a week and trained with a fitness trainer just as I had always done, but the weight piled on. While my friends were busy planning their weddings and starting their families, I began my journey of the next seven years, seeking help from doctors all over California for a correct diagnosis and treatment. My beautiful thick, long blonde hair fell out by the handfuls. I got up to nearly 250 pounds, but the odd weight gain was mostly in my round moon face, and my stomach stuck out over fifty-four inches. Soon, many other symptoms started: I had constant anxiety, and I felt like I wanted to come out of my skin from the constant nervous energy racing through my body.

Nighttime was the worst; while I should have been sleeping, I paced my apartment to help slow down my racing heart. I felt nauseous from anxiety 24/7. I slept fifteen to twenty minutes at a time, but once I’d fall asleep, I would jolt awake with a shot of more nervousness pumping throughout my body. Sometimes I’d go days with only a few hours’ sleep.

Soon my blood pressure had to be controlled by medication; I also needed medication for anxiety and depression just to function. As a single woman, I needed to be able to keep my job; I needed to keep my medical insurance so I could keep seeking help from doctors. Although there were so many times when I wanted to give up, I had to keep going.

All the medical professionals said there was nothing medically wrong with me; just eat well and exercise more was their sage medical advice. I knew they were missing something as none of this was in my nature. A person doesn’t go from being thin, happy, and full of life to gaining over 100 pounds and enduring chronic anxiety and depression for no reason.

I continued for seven long years seeking help from general doctors to endocrinologists to gastroenterology specialists, rheumatologists, hematology experts, and even psychologists. All were highly respected and highly educated; unfortunately, none were willing to think outside their narrow perspective; none of these medical professionals wanted to listen to me, who in their words “let herself go.”

They would not believe me when I told them I was truly eating well and exercising properly but instead, offered more and more prescription drugs. When I said I didn’t want to take the drugs, and I wanted to find out what was causing me to be so sick, they wrote me off as unwilling to help myself. I was madly frustrated and felt betrayed by the medical community as well as society.

Many friends and even some family members felt I was causing myself to be sick. I’m not a shy personality, and I had no problem speaking up. Loudly, I begged for proper diagnosis; I begged for proper treatment. I told everyone, loud and clear, there was something medically killing me, and I wanted my life back, but they continued to blame me for my laundry list of poor health issues.

Eventually, I was so sick, I accepted that this undiagnosed illness was going to kill me eventually, but I was determined NOT to die before I found out what disease had turned my health upside down! I wanted to make sure other people did not have to suffer from this horribly embarrassing, lonely, debilitating disease. So, I started my journey to save myself, and whoever else was suffering like me.

Unlike today, back then, I couldn’t simply Google my symptoms, so I had to research by going through all my medical records. I remained persistent until I got copies of everything I needed. Through the years many doctors suggested I had hormonal issues, but they attributed any hormonal abnormalities to the fact I was obese and suggested if I lost weight, all my health problems would be gone. They were like an annoying, broken record.

But I didn’t go to medical school, so I had to rely on my intuition and the fact that I knew my body better than anyone else. I had a hunch the hormone issues were causing ALL my health issues.  Fortunately, while going over thousands of pages of lab results and doctor’s notes, among innumerable discrepancies of the medical opinions and endless mismanagement of my healthcare, I also found a few clues of where to start.

I borrowed a friend’s computer and typed in Cortisol. According to my health records, this hormone had only been tested once in seven years, and it registered as Very High—Above Normal level. The doctors said it was high because I was overweight, but I wanted to see for myself. And up on the computer screen popped an article published by the Pituitary Network Association,www.pituitary.org.

The article’s headline read: “Cushing’s Disease.” In one of my previous medical reports, a doctor wrote he ruled out Cushing’s syndrome. This article proved him uneducated about proper testing for Cushing’s, and he was very wrong.

Cushing’s disease is a secondary disease caused by a pituitary brain tumor. The pituitary is a small, bean-shaped gland, less than one centimeter in size, and referred to as the master gland. It sits at the base of our brain between our optic nerves and carotid arteries. This small but powerful gland controls our quality of life by producing major hormones.

A Cushing’s tumor produces high levels of adrenocorticotropic hormone, (ACTH), which in turn signals the pituitary gland to stop producing the normal production of ACTH. One of the key functions of the pituitary gland is to keep us alive by signaling the adrenal glands when to produce and when not to produce Cortisol, our one life-sustaining hormone. However, the ACTH producing tumor never shuts off the production of ACTH, causing the pituitary to stop its normal feedback system with the adrenal glands.

Therefore, the adrenal glands never stop overproducing our fight or flight hormone, cortisol. For years the medical community and others told me that my health issues were all in my head. Well, in fairness, they were right. Luckily for me, I knew I was not causing this madness. Although it still sounds strange to say, I was so happy to find out that I had a serious and life-threatening pituitary tumor because, for the first time, I knew where to start my fight.

Once I suspected I had Cushing’s disease, I had to find the experts to confirm the often-complicated diagnosis. And that’s when the universe guided me through more research to meet the team that helped save my life! Dr. Pejman Cohan, my neuro-endocrinologist, and Dr. Daniel Kelly, my neurosurgeon, the director of the Pacific Neuroscience Institute in Santa Monica, CA. My angels were in my own backyard!

Dr. Cohan soon confirmed my diagnosis of Cushing’s disease, and it was Dr. Kelly’s difficult task to remove the tiny tumor that wreaked so much havoc. On April 14, 2000, Dr. Kelly successfully removed the tumor, and the next chapter of my journey began: helping others who suffer from this horribly underdiagnosed, misunderstood, life-threatening disease.

For the past nineteen years, I have been honored as a pituitary patient advocate spokesperson both nationally and internationally. Pituitary Tumors are the Best Kept Secret in Medicine. I’ve remained dedicated along with a team of pituitary neuro-endocrine experts to raise public awareness and help educate, and in some cases, reeducate the medical community on recognizing the symptoms of a pituitary tumor and/or hormonal issues related to the neuroendocrine system.

Pituitary disease is uncommon but not rare; however, there are commonly four types of pituitary tumors: prolactin-producing tumors, acromegaly, caused by too much growth hormone, Cushing’s disease, too much ACTH causes a secondary disease of too much cortisol hormone, and non-functioning tumors, which have their own set of problems.

For more information, visit www.hormones411.org, and https://www.pacificneuroscienceinstitute.org/pituitary-disorders/

Or email Sharmyn at pituitarybuddy@hotmail.com or sharmyn@hormone411.org

Join us for support and education Pituitary Patient Support Group Meetings: https://www.pacificneuroscienceinstitute.org/resources/patient-resources/patient-support-groups/.

We’re always bombarded by how great it is to pursue your passion, etc. – but we’ve spoken with enough people to know that it’s not always easy. Overall, would you say things have been easy for you?
I can say in all honesty the darkest part of my life, struggling for a correct diagnosis, has turned into the brightest part of my life. The pituitary tumor experts I work closely with: Dr. Daniel Kelly, Dr. Garni Barkhoudarian, Dr. Pejman Cohan, and a handful of others are truly amazing.

These teams of experts respect and value my patient advocate perspective, and they have restored my faith in our medical community. I’m honored to have traveled this difficult journey with these brilliant, caring, and compassionate doctors along with many others who are dedicated patient advocates.

But truly, what makes this journey rewarding and worth the endless hours we’ve all put into the proper treatment and awareness of pituitary disease is the patients. Seeing how far we have come to help raise public awareness and education in our medical communities makes me extremely proud I could be an important part of it.

Speaking with the patients, seeing them get their lives back, helping them to make good, educated decisions about their treatment is really what keeps us all going. And the icing on my cake has been meeting two of my closest friends, Krystina, who had a prolactin tumor, and Shady, who had acromegaly—both had pituitary surgery with Dr. Kelly, and they are leading healthy and productive lives. I love them like my sisters.

So, as you know, we’re impressed with Hormones411 – tell our readers more, for example, what you’re most proud of as a company and what sets you apart from others.
When I was growing up, I struggled all through school; learning wasn’t easy for me. One of my high school teachers had me stand up in the middle of her class in front of my peers while she berated and humiliated me over my poor grammar and spelling. I walked out of her class and never went back.

After that, I was petrified to write so much as a greeting card that someone would read. After barely graduating from high school, I was unable to pass the entrance exam for English 101 at our local college. I tested at a fourth-grade level. Earlier that year, I was diagnosed as severely dyslexic.

My high school in Southern California was overcrowded with 2100 students in my graduating class. My home life was chaotic, and there was no one there to help me either. I felt that my dream of becoming a writer was impossible. This was long before computers, so I stuffed my dreams of writing lighthearted mysteries way down inside.

But instead, I excelled at drawing, painting, graphic design, cartooning and photography; anything I could draw, design, capture or paint, I did extremely well. And I still love anything to do with creating art. After my surgery for the pituitary tumor, my passion to help others was bigger than my fear of writing. I knew I would have to write articles and correspond with medical professionals if I wanted to get their help and/or attention.

I created my first flyer, “They Were Right; It Was All in My Head—Pituitary Tumors. The Best Kept Secret in Medicine.” I was scared to death to let anyone see it, but I created a good design layout because of my graphic arts studies, and I finally worked up enough nerve to ask Dr. Kelly to look it over and edit it for mistakes. Dr. Kelly loved it, so after he made a few minor corrections, I was off and running!

The flyer traveled without the help of emails or social media, but rather it was distributed all over the country by people who read it and passed the flyer to someone they thought might have the same disease. This one little flyer helped save so many lives, and it started my patient advocate ball rolling. I took a couple of writing classes because I wanted to learn to be a better writer; one of the classes was to learn how to write for magazines.

I sent out thirteen query letters and got twelve rejections. But when the health editor from Woman’s Day magazine called me and asked if they could buy my story, I said, “I’m a writer; may I write it? And she said, yes! From there I continued writing and publishing my story and raising awareness about Pituitary disease. I’m not sure what was more rewarding, overcoming the challenges that had held me back with dyslexia or raising awareness about Cushing’s to over ten million readers; they both felt amazing.

Nineteen years after my pituitary surgery, it’s finally time for me to write my fun mysteries! I’m working on a three-book mystery series. I’ve finished the first draft, and I’m working on my revisiona. I hope to have, Dying to Date: Looking for Mr. Right but Finding Mr. Wrong, out in 2019; book two: Dying to Marry and book three: Dying to Divorce out after that. My Dying series website and Facebook page are coming soon. Praise to Lillian Nader, my amazing editor for her patience.

My goal is to get involved with speaking for schools to encourage kids not to let people discourage them from their dreams. It will always take hard work, but with dedication and a lot of effort, you can do what you love.

So, what’s next? Any big plans?
I have seen a lot of wonderful progress in  the work Dr. Kelly and his colleagues are doing at the Pacific Neuroscience Institute to advance treatments and improve the quality of life for their patients with cancerous brain tumors, pituitary tumors and so many other areas of the neurosciences. They are truly a comprehensive Center of Excellence.

I plan to continue helping them and their patients, and I am also excited to write my mystery stories. I will continue to use my public platform to help raise awareness for pituitary disease. I hope to have the opportunity one day to inspiring children the importance of reading great books and telling their stories.

Contact Info:

From http://voyagela.com/interview/meet-sharmyn-mcgraw-hormones411-santa-monica/?platform=hootsuite


Women’s Day, March 9, 2004 issue

Woman's Day, March 9, 2004 issue

What’s Wrong with Me?

I’d never heard of Cushing’s disease, until it was revealed as the culprit behind my mysterious illness

By Sharmyn McGraw
Photographed by Brett Panelli

For years I was a size two. I worked hard to maintain my weight by exercising and eating a healthy diet—I even had a personal trainer. But in 1993, at the age of 31, my body rapidly changed. In four days I gained 11 pounds, and by six months it was 85. I tried eating less and working out more, but my weight just kept going up.

One year and 100 extra pounds later, my appearance was drastically changed. With most of the weight centered around my stomach, I looked as if I were pregnant with twins. My face and chin were round and the back of my neck had a buffalo hump. On top of it all, my thick blond hair began falling out in handfuls.

The anxiety and depression were nearly unbearable. I was a 31-year-old woman with a 227-pound body living in Newport Beach, California, a town south of Los Angeles where there’s no such thing as being too thin. Obesity just does not exist, especially among my peers. As an interior designer, I was often invited to social events, but I was so embarrassed by my appearance that I started avoiding them.

What was going on inside my body was just as troubling. I felt as if I’d had a triple espresso on an empty stomach. I was flying at top speed with constant jitters and chronic indigestion, rarely sleeping more than two hours a night. Mentally and physically, I was exhausted.

Searching for an Answer

While my girlfriends were busy planning their weddings and starting their families, I went from doctor to doctor hoping that someone would figure out what was wrong with me. In seven years, I sought help from more than 15 highly recommended physicians, as well as nutritionists, psychotherapists, an acupuncturist and a naturopath. Pleading my case as if I was on trial for a crime I did not commit, my closing argument was always the same: “I eat a healthy diet and exercise fanatically. This rapid weight gain, anxiety and depression is completely out of my nature.”

Nearly ever doctor I saw, convinced that I was a compulsive overeater with a mood disorder, simply offered advice on dieting and exercise. “Maybe you just think you work out as often as Jane Fonda,” was one physician’s comment.

One doctor labeled me a hypochondriac, and another said I had too much yeast in my system. Over the course of seven years, I also heard that I had fibromyalgia, a spastic colon, acid reflux and a sleep disorder, was prediabetic and premenopausal. I endured painful and expensive medical tests, including two endoscopies, a colonoscopy, a bone marrow biopsy and multiple CAT scans and ultrasounds. I had my thyroid removed and ankle and knee surgery (due to the excess weight on my joints).

During this time, with my family living far away in Illinois, I relied on my friends for support. Many of them were helpful, but some just continued to drop subtle hints about the latest diets they had read about. As for having a relationship—anxiety, chronic muscle pain and uncontrollable diarrhea were just a few of the reasons I stopped dating completely.

As days turned into years, I knew my symptoms were getting worse. My mind was no longer sharp and quick, and I stuttered to complete even simple sentences. I was not sure how much more I could endure, but I was determined that my obituary would not read, “Obese woman dies of unknown causes.”

I gathered all of my medical records and went to work studying every line. I found there was just one thing almost every doctor agreed on: My cortisol level was too high. In fact, it was three times the normal level for this hormone, yet none of the doctors felt that it had anything to do with my laundry list of complaints. By this point, I was fairly certain that it did.

Borrowing a friend’s computer, I went on the Internet and typed in the word “cortisol.” Up popped an article on Cushing’s syndrome, a hormonal disorder caused by excessively high blood levels of cortisol, and there on the screen were every one of my symptoms. I couldn’t believe it! Had I possibly diagnosed myself seven long years after my symptoms began?

Suddenly I remembered that I had seen the word “Cushing’s” in a report from a clinic I’d been to four years earlier. Ironically, the doctors had ruled it out because my eyes weren’t yellow and I didn’t have mouth sores. Now my next step was to convince a doctor that I had this disease.

Finally, a Diagnosis!

I’ll never forget the day I was ushered into the office of endocrinologist Andre Van Herle, M.D., at UCLA Medical Center. I was prepared to once again plead my case. But without knowing anything about me, he simply shook my hand and said, “So you are here because you have Cushing’s.”

This was a doctor with more than 40 years of experience in diagnosing people with the syndrome, and he knew at first glance that I had the physical appearance of someone with the disorder. It was one of the happiest days of my life. I was overwhelmed with emotion, and tears streamed down my face. Most importantly, I realized I was not crazy and someone was willing to help me.

Dr. Van Herle and his colleague, Pejman Cohan, M.D., soon confirmed through blood tests that I did have Cushing’s syndrome. In my case, as in about 70 percent of cases, the problem was a tumor in my pituitary gland that was causing the overproduction of the hormone adrenocorticotropin (ACTH). This hormone stimulates the body’s adrenal glands to produce cortisol, the life-sustaining “fight or flight” hormone, which has many important functions. High amounts of cortisol, however, can wreak havoc, causing rapid weight gain, upper-body obesity, a rounded face, increased fat around the neck, anxiety and depression. Over time, abnormally high levels can even be life-threatening.

The next step was surgery to remove the tumor in my pituitary, located at the base of the brain, but there was one more obstacle. Although my hormone levels indicated I had a tumor, it was apparently so small that it wasn’t picked up on an MRI. So there was a chance that my surgeon, Daniel Kelly, M.D., director of UCLA’s Pituitary Tumor and Neuroendocrine Program, wouldn’t be able to locate it. Thankfully, he didn’t encounter that problem. On April 14, 2000, Dr. Kelly was successful in removing the tiny tumor though an incision in the back of my nasal cavity.

Today, four years later, I am 100 percent cured, and my body and mind are finally free from the horrible effects of Cushing’s. I’ve been able to lose 40 of the 100 pounds that I gained and am confident I can lose the rest. As a volunteer, I help facilitate a UCLA pituitary tumor support group, and I recently spoke to medical students at UCLA School of Medicine, explaining my difficulties obtaining a correct diagnosis. Looking back over nearly 10 years, it’s painful to think about all that I’ve been through. But I am so proud of myself for never giving up. I hope my story will help encourage and empower other women to do the same.

Sharmyn McGraw is a member of the Cushing’s Help and Support Message Boards.


Pituitary Cushing’s: Sharmyn (sharm on the boards) was featured on the Montel Show.

In 1993 at the age of 31, Sharmyn went from a socially acceptable dress size two and full of life to an obese size 22 and barely able to function in just one year. Despite the years of dedication to maintain a shapely muscular body, she suddenly had no control over the rapid weight gain. Her hours of personal fitness training and a healthy diet did nothing to stop the pounds from piling on. Sharmyn gained as much as eleven pounds in four days, 85 pounds in six months and 100 pounds in a year. Soon the weight gain was the least of her health problems; her hair fell out by the handfuls, her stomach stuck out like she was pregnant with twins, emotionally she felt like a misfit, and much more.

For seven horrific years Sharmyn searched the medical community for help, but over and over doctors told her there was nothing medically wrong with her…nothing some good old dieting and exercise couldn’t fix.

In spite of the many years of challenges within our healthcare system, Sharmyn ultimately diagnosed herself via the Internet and was fortunate to find a team of experts at UCLA Medical Center who confirmed her diagnosis. On April 14, 2000. Dr. Daniel Kelly, a world-renowned pituitary neurosurgeon—her angel – successfully removed the tumor and literally gave Sharmyn her life back.

Discuss this TV show.


Pituitary Cushing’s – interview with Sharmyn (sharm on the boards)


Cushing’s disease-Pituitary Gland

Sharmyn McGraw searched for answers for seven years for whatever it was that was killing her; finally she diagnosed herself via the Internet with Cushing’s disease, caused by a pituitary brain tumor.

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap 

In Memory of Melinda Smith ~ May 9, 2014

Leave a comment

melinda-smith

 

Sadly, we lost another Cushing’s patient on Friday, May 9, 2014.  Melinda was a member of the Cushing’s Help message boards since Jun 24,  2007.

She was only 25 and leaves behind a young son and many loving family members.

Just last year she posted:

I’m not really sure where to put this post so I’ll just put it here under miscellaneous.

Last Friday was probably the closest I’ve ever come to actually dying. Luckily, my dad came downstairs to check on me. At some point Friday I completely blacked out and my dad found me totally unresponsive, barely breathing with foam in my mouth. The paramedics told my dad that if he hadn’t found me when he did I would of definitely died.

Nobody knows what caused this to happen. The hospital is trying to say that I overdosed on drugs, which is TOTALLY 100% untrue. Especially, since I hadn’t even taken my medicine because I was staying up with my mom to help her clean and move my stuff upstairs from the basement. By the time the ambulance got me to the hospital I was still unresponsive and my kidneys had shut down.

I don’t remember anything from Friday or really much from Thursday night. All I remember is waking up in the ICU at the hospital in the middle of the night with some grumpy nurses who kept asking me why I tried to kill myself. I just don’t understand where they got the idea that I was trying to commit suicide, all of my medication was accounted for plus some.

Another thing, now I’m on oxygen 24/7. Since Friday I have a hard time breathing so the hospital sent me home with an oxygen tank. I feel so old. I’m only 24 and I don’t even smoke yet I’m stuck with an oxygen tank. Something just isn’t right.

We talked with my regular doctor and she thinks that I might of had a stroke or maybe a seizure. I go see her on Wednesday. But until then I can’t do anything and have to be supervised at all times.

It’s really strange, I’m being treated like a baby but I feel like I’m 80. I just want to be a normal 24 year old and feel like my age.

 

Information from the obituary at http://www.stephenson-wyman.com/obituaries/Melinda-Smith/#!/Obituary:

Melinda “Mindy” Smith, age 25, of Harrison, passed away suddenly on Friday, May 9, at her home. Mindy had attended Farwell High School where she had been an honor student and participated in track and cheerleading. She graduated from Clare High School in 2005. She was currently attending college and was hoping to pursue a career as a Psychiatrist. Mindy talked often of becoming a doctor to help others who were struggling with Cushing’s Disease.

Mindy had been battling a fight with Cushing’s Disease since 2005. She fought hard and long, but unfortunately it was a fight that she could not win. She was loved by many, but will be missed by many more.

Mindy is survived by her son, Landon Smith, parents, Deb (Marc) Davis, Fred (Nola) Riggs, of Harrison, and Ralph Rydman, her special friend, Ryan Smith, siblings, Alisha Green of Farwell, Marrissa Rydman of Gresham, Oregon, Misty Riggs of Weidman and Mike Riggs and Seth Riggs both of Florida, her grandparents, Gary (Penny) Smith of Clare, Sheryl (Phil) Wentworth of Harrison, Janet Riggs of Harrison, and Jay Davis of Clare. Also surviving are many aunts, uncles, and cousins that will miss her dearly. She was preceded in death by her grandparents, Dawn Wiggins of Muskegon, Harold Riggs of Harrison, and Carol Davis of Clare.

Funeral services will be held on Wednesday, May 14, at 2:00 PM at the Clare Chapel of Stephenson-Wyman Funeral Home with pastor John Kasper officiating. Friends may meet with her family at the funeral home on Wednesday from 11 AM until the time of services. Memorials may be directed to the family.

Rest in peace, Melinda

In Memory of Gregory J. Bart Jr. ~ May 7, 2016

Leave a comment

in-memory

Greg died of a presumed heart attack at the age of 55.

September 19, 2015 he said “I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I’ll have to consult my doc and see if this (Primary aldosteronism) may also be an issue.”


He wrote this about a year ago: On your daughter’s wedding day, you wouldn’t go down to the swap meet to pick out some second hand, ill-fitting dress, would you?

You would not.

If you were a baseball team manager getting ready for the World Series, you would not make a call down to your minor league affiliate and ask them to send up their 3rd best pitcher for the 7th game, would you?

You would not.

If you were being audited by the IRS, you would not go to the local high school and ask for assistance from the remedial accounting class, would you?

You would not.

And so, why would you not insist on, in fact demand, the very finest MRI equipment for your pit scan? A false negative is an invitation for massive bills down the road (for the blue pencil people in your insurance carrier’s claims dept.) and years of misery for you, the patient.

And you would not settle for a myopic tailor for that dress, would you?

You would not.

So, make sure your pit scan is done under the proper protocol, and looked at by an experienced hand. Without that, your time in the machine may be wasted.

You deserve the best. This disease will try to do it’s worst. Don’t let it, and don’t let your case be the one that falls in the cracks in the machine, or the system.


HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Share Your Experiences with Cushing’s

Leave a comment

 

The popular website “How Stuff Work”s is doing a survey of all kinds of diseases and Cushing’s is one of them!

Share your information and help get the word out to the world in general.

(I’m MaryO on there and I shared about my pituitary surgery and its aftermath.  I hope this info helps someone else like these boards and related websites have)

The idea is simple. Everyone shares their experiences with different treatments. StuffThatWorks automatically transforms these experiences into data about which treatments work best, and for whom

The questionnaire is here: https://stuff.health/s/u0A9djA5

Together, we’ll figure out which treatments work best for Cushing’s syndrome.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap

In Memory of Patti ~ May 2, 2002

Leave a comment

in-memory

Thursday May 2, 2002

From the Message Boards: ” I loved her, she was a great friend. She died of adrenal cortical carcinoma.”

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

In Memory of Kathryn McBride ‘Bridie’ Miller ~ May 1, 2007

Leave a comment

in-memory

From the Message Boards at http://cushings.invisionzone.com/index.php?showtopic=21816

“My name is Caroline and I dont post often but have met a few of you guys and read the board regularly, it has definitely been a godsend to cushies everywhere. The reason I am writing tonight is I have just received devastating information about a dear friend of mine, and a woman some of you may have met during testing. Her name is Kathryn Miller and she is a patient of Dr. Ludlam, that is how she and I met. She was diagnosed with cushings late last fall and had surgery in December and was doing pretty well afterwards.

Long story short, from the information I have received from her mother, She knew a man that she met off of a christian singles website.. I dont know many details about it, but I do know that he drove from his home in Pennsylvania to hers in Cleveland Ohio posing as a balloon delivery man, to then gun down her father killing him, and then to chase after her and gun her down in her neighbors front yard where she later died in surgery. This man then proceeded to commit suicide in his car when the police began to chase him.

Kathryn was an incredible person, and came from a loving, wonderful family. She was a fighter in every sense of the word, and never complained about the fact she was so sick. She always joked that she would one day ‘look hot’ in a bikini again. And she would always say there would be the day when we cushies would be happy and healthy again.

So heres to you Kathryn, I pray you are finally out of pain and that you are happy and cushings free in heaven. I will never forget you, you are in my heart forever. As much as it hurts to not have you here, I take comfort knowing you are smiling down from above. Fly on angel, fly on.”


Kathryn ‘Bridie’ and Albert Miller
Murdered May 1, 2007

~Ages 31 and 71, respectively ~Hometown: Mayfield Heights, OH

On May 1, 2007 Scott Esposito, 38, drove about six hours from his home in Macungie, PA to Mayfield Heights, OH. That’s where his love interest, Kathryn McBride ‘Bridie’ Miller, 31, lived. He showed up at her door with a dozen ‘I love you’ balloons. An attempt at reconciliation perhaps for, although Esposito’s family believed the two were still dating, those who knew Miller say that she broke off the relationship about six months earlier.

Miller lived with her parents. Her father, Albert Miller, 71, answered the door when Esposito arrived. The two exchanged words. Esposito subsequently shot Mr. Miller five times, killing him. Ms. Miller heard the commotion and tried to leave the house through the back door, Esposito shot her eight times as she fled. A neighbor called 911, but Ms. Miller was dead before help arrived. Esposito then tried to flee in his car. When cornered by police, he committed suicide with a gunshot to the head.

Police do not know exactly what caused Esposito’s rampage. He purchased a gun the day before the shooting. In his car he had over 500 rounds of ammunition. He did not have a suitcase or other personal belongings, suggesting that he planned to return home the same day or perhaps that he contemplated his suicide in advance. Police hope to access the couple’s email exchanges to learn more.

Esposito called Ms. Miller when he was en route to her house. She called her mother, who was not home, and told her Esposito was coming, but it does not appear she feared him. It seems, though, that she asked her father to turn Esposito away, resulting in the argument Mr. Miller and Esposito had at the door.

Ms. Miller met Esposito via an online dating site for Catholics. There are conflicting reports about how long ago they met. It may have been as long as two years ago. They saw each other infrequently – because they lived 400 miles apart – but emailed and talked via phone daily when they were together. A friend said Ms. Miller became concerned over Esposito’s ‘irrational’ behavior and ended the relationship in October 2006. One news story said the couple had a brief on and off relationship last fall and only limited contact since December.

Esposito had a bachelor’s degree in business administration and worked as an independent insurance broker. He lived with his parents and older sister, who had spina bifida, so he could help care for them. He had no criminal record. His family says the shooting was completely out of character for him.

Mr. Miller ran his own employee placement agency from his home. An employee of the business was in the home at the time of the shootings, but was unharmed.

Ms. Miller, who had cerebral palsy, held both a Master’s degree in education and a certificate in speech pathology. She worked previously as a teacher.


From: http://www.cleveland.com/news/plaindealer/index.ssf?/
base/cuyahoga/1178181906224960.xml&coll=2

Shooter left behind 2 victims, questions
Man drove hours to ex-girlfriend’s house for ‘purpose,’ police say
Thursday, May 03, 2007
Damian G. Guevara
Plain Dealer Reporter

Mayfield Heights – Scott Esposito drove 400 miles from his Pennsylvania home Tuesday with balloons for his long-distance love interest. He also had a loaded gun.

Esposito ultimately gave Kathryn McBride Miller the bullets – at least eight hollow-point rounds to her head, torso and extremities. He also shot and killed her father, 71-year-old Albert Miller. As police closed in a short time later, Esposito put the black, .22-caliber Luger in his mouth and pulled the trigger.

With the shooter and his victims dead, police on Wednesday were trying to make sense of the rampage. Investigators met with relatives to learn more about the relationship between Miller, 31, and Esposito, 38, of Macungie, Pa., about 65 miles northwest of Philadelphia.

Esposito dated Miller sporadically last fall, but their contact had waned since December, Lt. Chris Sonnhalter said. Miller never reported any trouble between the two to authorities, and her family knew of Esposito, Sonnhalter said. It remained unclear how Miller and Esposito met, but the two never lived in the same area, Sonnhalter said. Police are looking at their e-mail exchanges for clues.

“Obviously, he had some bad intentions . . . whether to end his life or someone else’s,” Sonnhalter said.

Sometime before the killings, Miller learned Esposito was traveling across Pennsylvania to see her, Sonnhalter said. Early in the day Tuesday, she called her mother at work about the pending visit but did not express any alarm.

Kathryn Miller was a former teacher who had a license in speech pathology. She was a graduate of Xavier University and the University of Virginia, where she earned a master’s degree in education. She taught in Hudson schools for one year, in 2002-03.

Her father, Albert, ran an employee-placement business from his home, police and neighbors said.

Police found a work badge belonging to Esposito in his green Jeep Cherokee but learned little about the man Wednesday. He had no criminal record.

Neither the Miller family nor Esposito’s relatives could be reached for comment Wednesday.

Police believe the bespectacled Esposito wanted to maintain a romantic bond with Miller against her wishes and became angry when spurned.

“It was about the relationship,” Sonnhalter said. “I think he brought that gun to Cleveland for a purpose.”

Sonnhalter gave this account of the slayings:

Esposito, driving the Jeep Cherokee, arrived at the Millers’ Woodhawk Drive home in Mayfield Heights at 3:45 p.m. Clutching the balloon bouquet, Esposito knocked on the door.

Albert Miller answered. Nobody witnessed the confrontation, but police believe the men argued.

Esposito shot the elder Miller five times in the chest.

Kathryn Miller was watching television in the family room. She heard the commotion and tried to flee the house through a garage door.

Esposito fired at Miller as she ran into her front yard.

She collapsed near a neighbor’s door, leaving behind a trail of blood.

There was a third person at the Miller home: a woman who worked for Albert Miller was in a basement office and was unharmed.

Esposito got in the Jeep and sped away from the house. Woodhawk Drive is a dead-end street, so Esposito headed east toward SOM Center Road.

Three police cars blocked him in as he neared the intersection. As officers surrounded the vehicle, Esposito put his new gun in his mouth and fired.

One officer discharged a shot that struck Esposito in the right arm and shattered the passenger-side window of the vehicle.

Investigators found a box containing more than 500 rounds of ammunition in Esposito’s Jeep. He had purchased the Luger at a Pennsylvania store Monday evening for about $200.

Plain Dealer reporters Donna J. Miller and Ellen Jan Kleinerman and news researcher JoEllen Corrigan contributed to this story.

To reach this Plain Dealer reporter:
dguevara@plaind.com, 216-999-4334

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Pituitary Cushing’s In the News!

Leave a comment

She experienced extreme weight gain, thin skin and a racing heart. It took years to finally solve the medical mystery.

Angela Yawn went to a dozen doctors before finally getting a diagnosis for her life-disrupting symptoms. Angela Yawn went to a dozen doctors before finally getting a diagnosis for her life-disrupting symptoms.Courtesy Angela Yawn

 

 / Source: TODAY

When a swarm of seemingly unrelated symptoms disrupted Angela Yawn’s life, she thought she was going crazy.

She gained weight — 115 pounds over six years — even as she tried to eat less. Her skin tore easily and bruises would stay on her body for months. Her face would suddenly turn blood red and hot to the touch as if she had a severe sunburn. She suffered from joint swelling and headaches. She felt tired, anxious and depressed. Her hair was falling out.

Then, there was the racing heart.

“I would put my hand on my chest because it made me feel like that’s what I needed to do to hold my heart in,” Yawn, 49, who lives in Griffin, Georgia, told TODAY.

“I noticed it during the day, but at night when I was trying to lie down and sleep, it was worse because I could do nothing but hear it beat, feel it thump.”

Yawn, seen here before the symptoms began, had no problems with weight before. Yawn, seen here before the symptoms began, had no problems with weight before.Courtesy Angela Yawn

Yawn was especially frustrated by the weight gain. Even when she ate just 600 calories a day — consuming mostly lettuce leaves — she was still gaining about 2 pounds a day, she recalled. A doctor told her to exercise more.

Yawn gained 115 pounds over six years. "When the weight really started to pile on, I stayed away from cameras as I felt horrible about myself and looking back at this picture is still very embarrassing for me but I wanted (people) to see what this disease has the potential to do if not diagnosed," she said. Yawn gained 115 pounds over six years. “When the weight really started to pile on, I stayed away from cameras as I felt horrible about myself and looking back at this picture is still very embarrassing for me but I wanted (people) to see what this disease has the potential to do if not diagnosed,” she said.Courtesy Angela Yawn

In all, Yawn went to a dozen doctors and was treated for high blood pressure and congestive heart failure, but nothing helped. As a last resort, she sought out an endocrinologist in February of 2021 and broke down in her office.

“That was the last hope I had of just not lying down and dying because at that point, that’s what I wanted to do,” Yawn said.

“I thought the problem was me. I thought that I’m making up these issues, that maybe I’m bipolar. I was going crazy.”

What is Cushing disease?

When the endocrinologist suddenly started listing all of her symptoms without being prompted, Yawn stopped crying.

Blood tests and an MRI finally confirmed the doctor’s suspicion: Yawn had a tumor in her pituitary gland — a pea-size organ at the base of the brain — that was causing the gland to release too much adrenocorticotropic hormone. That, in turn, flooded her body with cortisol, a steroid hormone that’s normally released in response to stress or danger. The resulting condition is called Cushing disease.

Imagine the adrenaline rush you’d get while jumping out of an airplane and skydiving — that’s what Yawn felt all the time, with harmful side-effects.

Yawn was making six times the cortisol she needed, said Dr. Nelson Oyesiku, chair of neurosurgery at UNC Health in Chapel Hill, North Carolina, who removed her tumor last fall.

“That’s a trailer load of cortisol. Day in, day out, morning, noon and night, whether you need it or not, your body just keeps making this excess cortisol. It can wreak havoc in the body physiology and metabolism,” Oyesiku told TODAY.

The steroid regulates blood pressure and heart rate, which is why Yawn’s skin was flushed and her heart was racing, he noted. It can regulate how fat is burned and deposited in the body, which is why Yawn was gaining weight. Other effects of the steroid’s overproduction include fatigue, thin skin with easy bruising, mental changes and high blood sugar.

Cushing disease is rare, affecting about five people per million each year, so most doctors will spend their careers without ever coming across a case, Oyesiku said. That’s why patients often go years without being diagnosed: When they complain of blood sugar problems or a racing heart, they’ll be treated for much more common issues like diabetes or high blood pressure.

Pituitary gland is hard to reach

Removing Yawn’s tumor in September of 2021 would require careful maneuvering.

If you think of the head as a ball, the pituitary gland sits right at the center, between the ears, between the eyes and about 4 inches behind the nose, Oyesiku said. It’s called the “master gland” because it regulates other glands in the body that make hormones, he noted.

Pituitary gland - female brain anatomy lateral view The location of the pituitary gland makes it heard to reach.janulla / Getty Images

It’s a very difficult spot to reach. To get to it, Oyesiku made an incision deep inside Yawn’s nose in a small cavity called the sphenoid sinus. Using a long, thin tube that carried a light and a camera, he reached the tiny tumor — about the size of a rice grain — and removed it using special instruments. The surgery took four hours.

The potential risk is high: The area is surrounded by vessels that carry blood to the brain, and it’s right underneath optic nerves necessary for a person to see. If things go wrong, patients can become blind, brain dead, or die.

Recovery from surgery

Today, Yawn is slowly returning to normal. She has lost 41 pounds and continues to lose weight. Her hair is no longer falling out.

But patients sometimes require months or even a few years to adjust to normal cortisol levels.

“It takes some time to unwind the effects of chronic exposure to steroids, so your body has to adapt to the new world order as the effects of the steroids recede,” Oyesiku said.

"My life was on hold for five years... I'm trying not to be too impatient," Yawn said. “My life was on hold for five years… I’m trying not to be too impatient,” Yawn said.Courtesy Angela Yawn

Yawn’s body was so used to that higher cortisol level that she’s had to rely on steroid supplements to feel normal after the surgery. It’s like an addict going through withdrawal, she noted.

The next step is finishing another cycle of supplements and then slowly tapering off them so that her body figures out how to function without the steroid overload.

“I am definitely moving in the right direction,” she said. “I hope that I’ll get back to that woman I used to be — in mind, body and spirit.”

In Memory: Alena Renea Weeks Greenhill ~ March 30, 2007

Leave a comment

in-memory

March 30, 2007

AIKEN – Ms. Alena Renea Weeks Greenhill, 31, of Aiken, died Friday, March 30, 2007 at her residence. Funeral services will be held at 3:00 PM Wednesday in the Shellhouse-Rivers Funeral Home Chapel. Reverend Robert Rish will officiate. Interment will follow in the Clearwater Branch Baptist Church Cemetery.

Pallbearers will be Joshua Weeks, Jim Rutland, Morgan Weeks, Greg Smith, Jimmy Jones, and Charles Jones.

Renea was born in Aiken, a daughter of Gail Weeks, Aiken; and James “Randy” and Debbie Weeks, Aiken. She was a lifelong resident, and worked as a medical assistant at the Women’s Health Association.

In addition to her children, Olivia Ann “Libby” and David Randall “DJ” Greenhill, survivors are a sister, Dawn Rutland (Jim) Aiken; a brother Joshua Weeks (Melissa) Aiken; Nikki Weeks, Aiken, Danielle Smith, Aiken; Greg Smith (Maria), Aiken; Kasey Smith, Aiken; JerriLynn Smith, Lincolnton; a maternal grandmother, Joyce Weeks, Aiken; a paternal grandmother, Harriette Weeks, Aiken; twelve nieces and nephews; and her special friend, Jimmy Jones, Aiken.

A niece, Taylor Weeks, and a grandfather, Gene Weeks, preceded her in death.

Please visit Renea’s online memorial at shellhouseriversfuneralhome.com

The family will receive friends at the residence of Joshua Weeks, 2334 Wire Road, Aiken on Tuesday from 12-5 PM and from 6-8 PM Tuesday evening at Shellhouse-Rivers Funeral Home, Inc., 715 East Pine Log Rd., Aiken, SC.


From my email:

Mary, I got a call tonight from Renea Greenhill’s mom who told me that Renea died Friday night. Renea was from Aiken, SC and was on the board until she did not have a computer anymore. She had tried to get groups together in SC. She had left a note that if she died that her mother was to call me and I was to let everyone on the Cushing’s board know of her death. Her mother had seen her on Friday night and talked with her later. Her boyfriend came over and found her on the floor. He called her mother who told him to call 911. He did and her mother got right over there. 911 got there, but did not attempt to revive her and she was to be an organ donor and the organs could not be used. She was dead. An autopsy found nothing wrong with her physically. I told her mother that I bet she died of an adrenal crisis and told her mother to call the coroner to have them do tests for that. She was very appreciative of my thinking of this and was going to call. Renea had been to see Dr. Laws for surgery several years ago. She ended up with meningitis from surgery there. She ended up in critical care at the Medical University of SC. Later had her adrenal glands removed. She had “beat” cushings her mother said. She had lost over 300 lbs. She has two young children who are now without a mother. Her husband had divorced her several years ago, so she was rearing the children as a single mom. Please pass this on to everyone for me for Renea at her request if this happened to her. She loved her Cushing’s friends. Below is her obit. Memorials are to be made to the Cushing’s group.

On the message boards:

• I knew Renea – I met her the Tennessee CUSH Conference. What a shame sad.gif

• I am sorry to hear of Renea’s passing…thank you for sharing with us. Condolences to her family, friends and loved ones.

• So very young — so very sad.

• My Goodness, she was so very young. This is a startling reminder how serious an adrenal crisis can be. Thank you for carrying out her wishes to let us know.

• Oh my…

I talked with Renea a few months ago. It may not have been adrenal crisis, but it may have, as Renea, after her BLA, didn’t need replacement. She hadn’t taken hydro for some year(s), and yet her cortisol was always “0”. The doctors would just scratch their heads.

Thanks for posting Mary. My prayers are with her and her family.

• I am so sorry to hear about this. My prayers go out to her children and her family. What is scary to me is the fact that, considering her history no one there thought to check to see if an adrenal crisis was responsible.

• How terribly sad. And the two young kiddies too. She sounds a remarkable woman. Very sad indeed.

• I am absolutely heartbroken over Renea’s death. She was far too young and she already suffered so much. I hope her kids know how much she loved them. I have been struggling with my own health issues lately and her death brings home just how dangerous our lives can be.

I hope she is at peace and that her family is able to cope with her death. I am so very sorry that we lost such a great person. Renea was a great source of strength for me and I will miss her dearly.

• Very sad news! My thoughts are with her family and her children.

• Thoughts with her family and children. Her mother must be devastated. I hope she can read the posts and know she’s thought of.
Very sad for these children to lose their mother at such a young age.

• My deepest condolences to her family and friends.

• How very sad. So young, and had already been through so much.

My thoughts are with her family & friends

• So very sad. So young , & so much still ahead of her.

In my prayers

• I wonder if they checked her for Nelson’s also? She looks very tan. My deepest condolences to her family and friends.

• Such a sad ending to a beautiful life. Sending peaceful thoughts to her family..

• It is very sad to fight that hard… and then the family does not know why… my thoughts and prayers are with them… It breaks my heart to think that she had to suffer so much, but she must have been such a strong, brave person to go through it. My prayers are with the family..

• How sad – she was so young. My sympathies to her children and all of her family.

• I’m so sorry to hear that another Dear Cushie was lost, I remember Renea from the old board mostly and remember how, very sick she was after her surgery, as others said she was way too young, and I’m sure her family and friends will miss her so very much. Someone we have to get all doctors on board to realize how very serious this illness is, not just a few who are out West, we all know they are good doctors, but we need some good ones in the Midwest, in the South, in the East, I know there are some, but we need more pit centers and more pit spealist on understands the devastating and life or death realality some of these pituitary tumors or adrenal tumors can cause.

I’m so sorry to learn on this happening to a dear cushie I remember from the boards.

• My prayers to her family. May God bless and keep her children. I can’t imagine how hard this is for them.

Surviving Cushing’s: Area woman hit by rare disease

Leave a comment

Gina Gregoire Helton is certain if she had a dollar for every time she has heard the word “rare,” she’d be a rich woman.

She has a lot to be thankful for. She’s been married to Sean, the love of her life, since 2011. She has a warm, gregarious family consisting of eight sisters, three brothers, over 30 nieces and nephews and two loving parents, Charles and Denise Gregoire of DeWitt.

But in April 2012, Helton started to experience disturbing symptoms. She had sudden-onset hip pain. A few months later, she had unexplained hair loss and breakage. Deep, red and purple stretch marks, also known as striae, started appearing on her skin.

They were painful and she credits them for essentially saving her life.

“They were the ‘red flag’ that something was definitely not right,” Helton says.

She went to see her doctor, Dr. Jennifer Bell at Genesis Health Group in DeWitt, who admitted she was stumped. Yet, based on the presence of the striae, Bell wanted to test one more thing – Helton’s cortisol levels.

Cortisol is a life-sustaining adrenal hormone that influences, regulates or modulates many of the changes that occur in the body in response to stress. Those changes include blood sugar (glucose) levels, fat, protein and carbohydrate metabolism to maintain blood glucose; immune responses; and anti-inflammatory actions.

As it turned out, her levels were abnormally high. Bell referred her to a specialist in the endocrinology department at University of Iowa Hospitals and Clinics (UIHC) in Iowa City. Cortisol levels fluctuate throughout the day, but further testing showed Helton’s levels consistently remained extremely elevated.

That was the first time she had ever heard of Cushing’s disease.

Helton had nearly every single symptom of the disease that affects less than 200,000 people in the United States.

In addition to hip and back pain, hair breakage and stretch marks, she suffered from moon face, frequent bruising, depression and anxiety, weight gain, frequent urination, high blood pressure and muscle atrophy.

“I was extremely relieved to have a diagnosis,” Helton says. “At the same time, I was scared as I started to learn more about Cushing’s disease and what it can do to your body. There are people dying from this because of improper diagnosis. I was blessed my doctor at UIHC was educated on the disease.”

Most individuals diagnosed with Cushing’s have a tumor on their pituitary or adrenal glands.

Helton’s tumor, however, was located on her lung. Fortunately, her doctor decided to scan that area of her body and discovered the tumor.

In November, Helton underwent surgery to remove the tumor in her chest. However, during the procedure, some microscopic-sized tissue was left behind. So, in January, she found herself in the operating room once again. However, in order to get rid of the remaining tissue, the surgeons’ only option was to remove Helton’s entire left lung.

The situation went from bad to worse when it was discovered the tumor was malignant. It was a very rare tumor called a carcinoid tumor. These tumors are slow-growing cancers that typically start in the lining of the digestive tract or lungs.

After they took her lung, doctors noticed the cancer had spread to her lymph nodes. Members of the oncology department recommended chemotherapy and radiation as treatment.

Because her particular condition is so rare, doctors cannot say definitively what Helton’s prognosis is. Living with only one lung, her physical activity is restricted. Yet, Helton is partaking in water exercise to help ease the pain in her hips and keep her muscles strong. While climbing the stairs is a major obstacle, she intends to participate in the next Fight for Air Climb in Des Moines sponsored by the American Lung Association.

It may take her longer to reach the top than most, but she has made it her goal to finish.

Helton also plans to become an advocate for the Cushing’s disease community. She has yet to meet anyone else in person who suffers from the condition, but has connected with hundreds of them through social media.

In particular, Helton has made contact with Dr. Karen Thames from Chicago. She has been diagnosed with Cushing’s and is working on a documentary called “The War to Survive Cushing’s Disease.”

Helton says the experience has dramatically changed her attitude and outlook on life. She no longer “sweats the small stuff” and her relationships with her loved ones have become stronger.

As for people who are experiencing any of the symptoms associated with Cushing’s, Helton encourages them to seek help.

Even if there are no immediate answers, don’t give up.

“If you are experiencing something with your body that doesn’t seem right, keep seeking help. There is a doctor out there somewhere that will help you. We all know our bodies and when something is wrong.

“My faith and relationship with God has grown tremendously. I count my blessings daily. That is the silver lining. My favorite quote is, ‘Everyone you meet may be fighting a battle you know nothing about. Be kind. Always.'”

via Surviving Cushing’s: Area woman hit by rare disease.

 

In Memory: Shianne Lombard-Treman, March 28, 2018

Leave a comment

 

Shianne was a Cushing’s Survivor who had just published a book, Be Your Own Doctor

After 17 years as a personal trainer, I ran into health problems of my own, eventually having a name put to it…“Cushing’s Syndrome,” a rare adrenal disease. Tumors were growing on my adrenal glands over-producing Cortisol, your stress hormone.

With 24/7 false fight-or-flight stress signals, the body goes haywire, producing horrific side effects such as weight gain around the midsection and back of neck, diabetes and blood sugar deregulation, inflammation, muscle deterioration, frail bones, hair loss, poor immunity, infertility, moonface, buffalo hump, extreme fatigue, brain fog, confusion, severe anxiety/depression and chemical imbalances.

Being constantly diagnosed as “healthy” caused me to be told, when I was finally diagnosed correctly, that I had maybe five years to live. Misdiagnosis can be a killer.… It is now my personal mission and obligation to help those suffering from any chronic illness that steals your joy, and bring awareness to Endocrine Disorders. From my journey through Cushing’s to Addison’s to recovery—from triathlete to barely being able to dress myself and finally to recovering into a stronger person I never knew I was.

 

 

Shianne Lombard Treman took her life on Wednesday, March 28th after a long struggle with depression brought on by the removal of her adrenal glands to the advancement of Cushing’s Syndrome. 

Shianne is survived by; her husband Timothy Treman, fur babies Molly & Charlie of Baltimore, her mother Geraldine Lombard, sister Danielle Huston, Husband John Huston and their 6 children, Caleb, Alaina, Juliana, Jeremy, Ashley, Aaron of Tawney Town, Brother Michael his wife Sue and brother Enzo and partner David of San Francisco and New Orleans. 

Shianne was born on May 3, 1977. She graduated from Towson University with a degree in Kinesiology. She used this degree to become a personal trainer. She loved helping people get healthy and ended up training two of the “Biggest Losers” on the reality TV show. This led to her being on Oprah as well as Dr. Phil to talk about fitness and health. 

She started her own business as a trainer in San Francisco for 5 years. It was in San Francisco that she met her dashing husband, Tim Treman. They were married in Bethany Beach Delaware in May of 2013 and moved to Baltimore in June of 2013 joining the O’Donnell Square neighborhood.

Among her accomplishments are a Black Belt in Taekwondo, multiple marathons, Tri Athlons and her work with charities.
Shianne changed lives. So many people have come forward to say that she changed their life by teaching them healthier ways to live. She inspired so many that when she was diagnosed with Cushing’s disease, a rare condition, she went into research mode to find out everything she could so she could keep doing this work of helping others. Again, she brought her knowledge of health into play by writing a book about the experience to help others with this disease. “Be Your Own Doctor” explains her battle to maintain fitness and recovery which had never been previously explored for folks dealing with Cushing’s. She was asked to speak at the Magic Johnson conference on rare diseases and in Congress about Cushings. She was also asked to speak at the National Institute of Health Conference. Unfortunately, that was never to be. Cushing’s took more than just her body, it slowly took her mind and spirit.

She was an extraordinary person who lived an extraordinary life… a bright star that burned out too soon.

Viewing will be from 4-7PM Wed April 4th at Connelly Funeral Home of Dundalk 7110 Sollers Point Rd 410 – 285 – 2900.
Reception from 7:30- for close family and friends at Sparrows Point Country Club 919 Wise Avenue, Baltimore MD 21222

Her obituary can be read here.

 

Shianne F. Lombard-Treman
May 03, 1977 – March 28, 2018

Older Entries

%d bloggers like this: