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Jessica and Justin, Siblings In the Media

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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.

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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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We Have a New Bio Form!

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We have a new form to add your own bio!

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Ashley D, Possible Familial Cushing’s Bio

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Hi all, I am Ashley.

My mother has Cushing’s and I have just found out I have high cortisol levels. I am nervous about this but if my mother can make it through this so can I.

I am 30 years old and one of my biggest problems is my children are too young to understand what is going on.

I am glad that I have my mom who has already been through this before, so she will understand everything.

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Sam in the News

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Sam is Jackie’s daughter.  There is more info about their family’s Cushing’s experiences here: https://cushingsbios.com/2013/06/23/jackie-samsmom-adrenal-bio/

Sam and her mom also participated in a Cushing’s Help interview which you can read here: http://www.cushie.info/index.php/cushing-s/about-us/interviews/207-sam-and-her-mom-jackie-february-2-2005

And one to listen to on BlogTalkRadio at http://www.blogtalkradio.com/cushingshelp/2008/05/15/interview-with-jackie-samsmon-jordan

This article was posted by long-time message board member Samsmom about her daughter Sam.

AIM senior Samantha Edgar doesn’t let health issues hold her down

superkidedgar

SNOHOMISH — Samantha Edgar, 17, has faced limitations with serious health issues, including Addison’s disease and osteoporosis. But the AIM High School senior is overcoming them in amazing ways.

Question: Your school administrator says you come to school every day with a smile despite some serious health challenges.

Answer: I’ve had adrenal deficiency since I was 4 years old because my adrenal glands were infected with a lot of tumors. The guy who diagnosed me (Dr. Constantine Stratakis) I’m actually doing an internship with this summer at the National Institutes of Health. It’s pretty nerve-wracking. It will be fun.

Q: Wow. How did you end up with that?

A: (My mom and I) were talking about asking for an internship, and joking that he’d probably just say apply, like he normally does. … I asked “if I can maybe shadow you this summer and, um, hang out?” He was like, “Of course.” All the interns just stared at me. (Most of them are in medical degree programs) who’ve applied five times.

Q: What do you hope to get from it?

A: I’m hoping to understand my own thing a little bit more afterward, and then have opportunities after that stem from it. It’ll be interesting at least.

Q: Your mom is planning to rent an apartment and live out there with you.

A: I’m still her baby. … If anything, though, it’s the best place to have an issue.

Q: Your last life-threatening experience was when you were 10. You had the flu and were unable to keep down your medications, which you need to take three times a day. What other issues are you susceptible to?

A: If I am to break a bone or something I could go into what’s called adrenal crisis. (The body) goes into shock.

Q: And yet …

A: I do mounted archery, which is horseback archery. My mom is pretty much nervous every time I go down the course because I’m probably going around 30 (mph) and shooting an arrow at a target or five.

Read the rest of the article here: http://www.heraldnet.com/news/aim-senior-samantha-edgar-doesnt-let-health-issues-hold-her-down/

samhorse

 

Melissa B, Undiagnosed Daughters

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undiagnosed4

 

Hi everyone, I never imagined that I would wake up this morning to a life changing realization. I have spent years asking doctors what is happening to my child with no amswers. She was just 5 years old when she began to display cushings symptoms. At the time we repeatedly raised concerns with our pediatrician about her dramatic weight gain specifically in her belly area which made her appear pregnant and a once advanced child was regressing academically but the doctor’s constantly told me not to worry because all children develop differently they said. By the time she was 9 years old she began to display the following symptoms:

1. More weight gain focused in the belly area, face, and back (buffalo hump) with the belly area being firm and her face having a slightly swollen appearance.
2. Dark Black skin around her neck and areas such as in between legs and tummy area
3. Complete loss of hair on her head
4. Complete loss of eyelashes
5. Continued Slow learning in school
6. Depression and Anxiety
7. Lots of hair on arms, legs, and pubic area
8. Acne
9. Stretchmarks

She has been teased brutally in school and after having her go through many tests with no answers I ran across the possibility of her having cushings. Since we have seen two endocrinologists and both have run saliva and urine tests and have said she doesn’t have cushings, thyroid issues, diabetes and so on and so on.

Now my 8 year old is having the same symptoms as her sister. Today i noticed that she is now losing her hair too and I’m absolutely devastated. We need answers and I don’t know where else to turn.

If anyone out there is reading this and can help me get answers please I’m begging you to please reach out to me.

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Don S (Don S), Undiagnosed Bio

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My name is Don.  I am 35and I am a career firefighter with 14 years on the job.

10 years ago I was injured badly at a fire and almost immediately noticed a change.  My skin began peeling off and I began gaining weight.

I knew about cortisol and its effect on the body because my mother passed away from Cushings at 46 after years of taking steroids for respiratory problems.  My doctors dismissed my issues as stress following the trauma.  My accident happened in March and by July, I had gained  80lbs.  I was constantly fatigued and developed acne all over my body.

A year or so later, I began having stomach issues.  Nausea and Reflux were with me everyday.   I continued to have high serum cortisol throughout the past 10 years but each time, it suppressed to just below the 1.8 threshold with dexamethasone so my doctors just dismissed it as stress.

In 2012, the dizziness and blurry vision began.  My spine is weak and my joints hurt constantly.  My legs are so skinny and weak, they shake when I stand and my heart races from any exertion.  I managed to continue working until a year ago when I accepted that I was putting myself and others at risk.

For the past year I have been paying guys to work for me in order to keep my job and insurance.  I worked hard for this career and promotions and I will not give it up without a diagnosis and confirmation that I can no longer do the job.

I have a new Endo now and she ordered a Urinary Cortisol.  It came back 4X higher than the upper limit.  She is convinced I have Cushings and it isnt just stress.  I have the following symptoms.  Weight gain of over 100lbs, Long purple stretch marks on my flank, side, and groin, Blurry vision, tachycardia, weak limbs, tremors, anxiety, puffy face, dizziness, stomach issues.

I am hoping after 10years of suffering, I may finally have my answer and that I can begin getting my life back.  I have a wife and 3 year old that really count on me and all I have been doing is letting them down.  Our lives are on hold because we do not know what the future will bring.

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Michelle (Michelle), Undiagnosed Bio

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Hi, I am a Mother of 3 boys, 20, 18 and 13.  My youngest has been steadily gaining weight, has a large round face with red cheecks and large torso.

I’ve been to 3 endocrinologists so far and have not been given a diagnosis of Cushing’s.  All of his cortisol levels were considered normal.  He also had an MRI of his pituitary and adrenals which were also negative.

The last endo diagnosed him with insulin resistance and he was put on Metformin. He has suffered from depression, anxiety, insomnia, nausea, buffalo hump, add gastrointestinal issues etc.  He has all of the symptoms except for the obvious stretch marks.

I believe he has cyclical cushing’s, which my sister found out she has after many years of testing.  A lot of the drs. I spoke to about this said they don’t believe in cyclical cushing’s.

It has been so difficult watching my son suffer and be ridiculed by other children. The doctors tell me to make him exercise and eat healthy (really? No kidding!)

Has anyone else had cushing’s WITHOUT the deep red stretch marks.  He does have stretch marks, but not the typical type you see in cushing’s.

Thanks so much

Michelle

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