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We Have a New Bio Form!

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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.

 

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In Memory: Lori Holt ~ January 6, 2008

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in-memory

 

Sunday, January 6, 2008

Lori’s sister-in-law wrote: “I am Kimberly, sister-in-law to Lori from Monmouth IL.

During the first few days of September 2007, Lori had surgery to remove her adrenal gland.
She experienced extreme difficulty post surgery and never recovered.

I wish to inform all who might have known her on this board that she passed away on Sunday, January 6, 2008.

She was hopeful that the surgery would help her,
and loved and appreciated her many friends and others who supported her.

Thank you to everyone here who knew her and offered encouragement and hope.”


Lori’s sister-in-law wrote again : “I apologize for the time that has passed since you wrote the last e-mail. I have sent Lori’s obituary to you in an e-mail from a newspaper. (http://www.thehawkeye.com/Story/obit_Holt_010808)

There is one error in the obituary. She obtained her graduate degree from Northeast Missouri State Univ., not Southwest as stated.

Lori was truly remarkable, and especially so in her fight with Cushing’s Syndrome (adrenal).

Lori lived in a small town in west-central Illinois, not far from the Mississippi River. As you know (because I learned it on your website!), most doctors never see a case of Cushing’s. At some point during the summer of 2007, Lori diagnosed herself by doing research online. This is evident by some written things she left behind in her home, and in letters she wrote to doctors as she went about putting together a medical team.

She worked to find doctors who would perform the specific diagnostic tests to find the Cushing’s. She clearly knew by that point what she was looking for. Remarkably, she found several doctors who worked with her on this. Sadly, it was too late. In the last few years, she’d begun to gain weight, which perplexed her a great deal. She would occasionally call me or write e-mails, and in addition to telling about things going on with her life and work, she would mention her frustration at not being able to quite sort out just what was causing her health problems.

Lori was a deeply kind and caring person. She was a gentle soul, and loved her preschool children so very much. She never missed sending my two sons a card not only for birthdays but on every single holiday you can imagine — Halloween, Thanksgiving, Valentine’s Day, St. Patrick’s Day. She was a single woman and worked with great determination to be self-sufficient.

She really loved her brothers, and was so glad as they married so she could have some “sisters” around. Once we moved from the Chicago area to northern Michigan in 1998, we didn’t see her often, and I regret that so much.

Lori fought her disease intelligently and valiantly. She suffered a lot while in the hospital between Labor Day weekend and when she died on Sunday, 1/5/08. At different points, she suffered from MRSA, shingles, and extreme breathing distress. I am quite certain that her body was just too spent by the disease to recover itself.

I thank you and all who might have been in contact with Lori during the very brief time she may have spent on your message board. I wish you all the very best in your continued struggle with disease and your on-going work to educate the public.

–Kim Jones


From http://www.thehawkeye.com/Story/obit_Holt_010808

Lori Holt

Lori A. Holt, 47, of Monmouth, Ill., died at 1:52 p.m. Jan. 6, 2008, at OSF St.Francis Medical Center in Peoria, Ill.

Born Oct. 7, 1960, in Galesburg, Ill., she was the daughter of Patrick M. and Patricia Noonan Holt.

Ms. Holt was a teacher at the Lutheran Preschool and Daycare Center in Monmouth for 11 years. She graduated from Galesburg High School and then graduated from Monmouth College with a bachelor’s degree. She also lettered all four years in volleyball, basketball and softball. She earned two master’s degrees in physical education and health from Western Illinois University and Southwest Missouri State. Ms. Holt played for the State of Illinois softball team at the national level for two years. She was head coach of women’s volleyball, basketball and softball at Spoon River College and was head coach of softball and basketball at Illinois College in Jacksonville, Ill. She was coach and athletic director at Costa Catholic High School in Galesburg for a number of years. Ms. Holt was a fan of the Green Bay Packers, the Boston Celtics and the St. Louis Cardinals. She was a member of Immaculate Conception Church in Monmouth.

Survivors include her parents of Knoxville, Ill.; five brothers, Frank Felz of Fort Worth, Texas, Michael Felz of Evanston, Ill., Paul Felz of Denver, Colo., Patrick Felz of Buffalo Grove, Ill., and Martin Holt of Grant Ranch, Colo.; nieces and nephews.

She was preceded in death by her grandparents.

No visitation is planned. The body has been cremated. Turnbull Funeral Home in Monmouth is in charge of arrangements.

A memorial mass will be at 10 a.m. Thursday at Immaculate Conception Church in Monmouth.

A memorial fund is being established for Lutheran Preschool and Daycare Center in Monmouth.

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In Memory: Jill’s Father ~ January 5, 2005

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in-memory

Jill’s Father

January 5, 2005

Jill wrote: “In December 2004 my dad who had addison’s for over 30 years had a triple bypass surgery 6 days before Christmas. The surgery was an amazine success and it was predicted he would be home before Christmas. Day 2 following surgery the hospital neglected to give him his steriods for his Addison’s for 22 hours, which they were completely aware that he had. 7 mistakes by hospital staff lead my father into shock and multiple organ failure. The doctor’s did think he would make it through the day. He survived for another 16 days until he contracted a hospital bacteria which crossed over into his brain and caused massive brain damage. Jan. 5, 2005 we took him off life support. I have been search the internet to learn more about Addison’s and why this happened.

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In Memory: Malia Kenney ~ January 4, 2017

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in-memoryMalia died January 4, 2017 at the age of 40.

Her sister wrote on Facebook:

My beautiful sister Malia Kenney passed away this morning. She has been dealing with Cushings Disease for the past 18 yrs or so.

She has been in the hospital and physical rehab since November with 2 different types on Pneumonia’s. Her poor heart just couldn’t take it anymore.

She was such a beautiful person inside and out and I will miss her so much.

I LOVE YOU BIA
Malia has been a member of the Cushing’s Help boards since August 3, 2004.  Her profile is here:  Cushing’s Help boards
malia-kenney

Alicia (Alicia), PCOS Bio

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Hi everyone,

I’m Alicia and I’m 18. I’ve been diagnosed with PCOS but it does not explain all of my symptoms. I used to be super athletic and played 3 sports. I got my period at 13 and it was regular. However, I started losing my periods.

At first they would come every few months but have since stopped completely. I have lost a lot of weight, especially muscle. I had to stop playing soccer because my leg muscles were giving out. At the same time I got very bad acne and started sweating through all my clothes. My hair started falling out of my head. I ordered rogaine at age 15 because the bald spots on my head were so embarrassing.

I’ve been on 3 different acne medications and accutane. I have been working since I was 14 but I can no longer stand through my shifts even though I am only working 5 hours at a time. I feel like absolute crap and the worst part is I’m so weak. And my appearance has changed a lot. My face is round, red, and my eyelids are swollen. I don’t recognize myself and can’t stand to look in the mirror. My arms and legs are sticks and I can’t gain muscle no matter what I try. I get sick all the time, I’ve had strep twice, oral yeast infections, UTIS in the past couple months.

I went to an endocrinologist about a year ago who tested for a bunch of common hormone problems. All of my adrenal hormones were high. Testosterone, DHEA, androstenedione, and aldosterone. However, my cortisol levels were never tested. I was told I have PCOS but there were no cysts on my ovaries.

I found a new endocrinologist who mentioned testing my cortisol levels, but later decided not to because I am underweight and cushing’s usually causes weight gain. To me, it seems like I could have the atypical kind, which causes asthenia instead of weight gain.

Let me know if anyone has suggestions on what to do now, I would really appreciate it. I am still in high school and I’m genuinely worried for my future if I can’t figure this out.

Peace and Love,
Alicia

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In Memory: Judy Kennedy – December 15, 2019

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Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness.  She was a great warrior for her children.

 

 

From 2008: Siblings Deal With Rare Cushing’s Diagnoses

By KALEY LYON

klyon@dailynews.net

COLBY — As a junior in high school, Justin Kennedy began getting sick and missing school on a regular basis.

He was fatigued, unable to sleep at night and gaining weight rapidly. He also was unable to focus on his school work and began experiencing memory loss.

After several doctor’s appointments, Justin was diagnosed with Cushing’s disease, a rare disorder caused by excessive cortisol levels resulting from a tumor on the pituitary gland.

At the time of Justin’s diagnosis, his younger sister, Jessica, also was showing symptoms of the endocrine disorder. Her diagnosis came at the same time.

“I think they both have had symptoms since they were little,” said their mother, Judy Kennedy.

Other symptoms include a round facial shape, flushed cheeks, excessive hair growth, skin discoloration and depression, Judy Kennedy said.

Weight fluctuation is uncontrollable. Weight is gained at a high rate, despite diet, exercise and other efforts, Jessica Kennedy said.

“The weight has a mind of its own,” she said.

The diagnosis, following many doctor’s appointments and tests, came last November. Today, Justin, 19, keeps busy with a job at McDonald’s, and Jessica, 15, is a freshman in high school taking online classes.

One of the most bothersome symptoms of the disease is the toll it takes on the sleeping schedule. Her children often are unable to sleep until early morning, Judy Kennedy said.

“When there was a chance for her to do online high school, it was such a relief,” she said. “We don’t have to worry about what time she starts her school work.”

Appetite fluctuation is another side effect. The two go through phases where they have healthy appetites, then hardly eat at all, she said.

That’s because the disease puts their bodies through various cycles, which can last for less than a day or for months at a time, Judy Kennedy said.

It’s predicted that about 15 people in a million are diagnosed with the disorder, which can make it difficult to find support and get answers, she said.

The family, however, discovered an online support group and has enjoyed the opportunity to communicate with other families in similar situations.

“I honestly do not know where our family would be if I wouldn’t have found that support group,” Judy Kennedy said. “Even though it’s still awful, it’s better to know that other people have the same symptoms.

“There are people on the streets who have this and have no idea,” she said. “And their doctors don’t either.”

Both teenagers also are preparing for surgery. In mid-May, the family will travel to Houston, where the siblings will have the tumors removed from their pituitary glands. This is expected to resolve the hormonal imbalances, Judy Kennedy said.

“I’m looking forward to that day,” she said.

This Topic on the Message Boards


JESS AND JUDY ARE MEMBERS OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jess and Judy answered questions in an online Voice Chat January 17, 2008. Archives are available.

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MaryO, 32nd Pituitary Surgery Anniversary

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Today is the 32nd anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 31 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

Last year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I didn’t look forward to telling my endo!  I have had a couple more injections.

I also developed an allergy to blackberries in October and had to take Prednisone – and I had to tell my endo that, too!

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

MaryO: From 40 Days of Thankfulness

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From 40 Days of Thankfulness

 

I am thankful, believe it or not, that I had Cushing’s. Mind you, I wouldn’t want to have it now, although diagnoses and surgeries seem “easier” now.

 

Having Cushing’s taught me a lot, including how to stick up for myself, how to read medical books to learn more about my disease, how to do web design, how to navigate NIH. It taught me patience, how to make phone calls. It brought me a lot of new friends.

 

I am also thankful that people are becoming more empowered and participating in their own diagnoses, testing and treatment. Things have changed a lot since my surgery in 1987!

 

 

When I had my Cushing’s over 30 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.

 

Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting hundreds of other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more Cushies than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!

 

I don’t know what pushed me in 1983 when I first noticed I was sick, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m thankful that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.

 

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