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Port woman optimistic in fighting her ‘ugly disease’

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Anyone who knows lifelong Port Jervis resident Katie Onofry Sandberg knows that her upbeat personality does not let much get her down. Despite a life-threatening illness that she was diagnosed with as a teen, the cheerful young wife and mother says she loves life and is always aware that there are others who have it much worse. She is grateful for the support of her family, friends and community as she continues a strenuous course of treatment to fight the disease.

A benefit dinner attended by more than 200 was held recently at the Erie Trackside Manor to assist the Sandberg family with mounting expenses and to show support as Sandberg’s treatment continues.

Sandberg has Cushing’s disease, caused by a tumor on her pituitary gland, which releases too much adrenocorticotropic hormone throughout her body.

“I call this the ‘ugly disease’ because it causes major weight gain in your stomach and face, stretch marks, weak muscles, scarring, pigmentation issues, acne, increased facial hair, and loss of hair on your head,” Sandberg said. “The worst is when I have a hard time holding my baby girl, or not having enough energy to play with her. I do push myself, but majorly pay for it in the end. This can affect you emotionally and cause depression and anxiety, but I get a lot my optimism from my dad and have learned to deal with it.”

Sandberg said a biopsy taken during an eight-hour surgery in 1999 failed to find the tumor and caused her symptoms to spiral out of control. Extensive research and persistence on the part of her mother, Sue Onofry, led her to Massachusetts General Hospital. It was there that the disease was diagnosed in June 2001, the same month that then 18-year old Sandberg graduated from Port Jervis High School.

After successful transsphenoidal surgery a few months later, the tumor was removed and Sandberg was placed on steroids for adrenal balance.

“Seven years later, in 2008, I got off the steroids and was considered cured for the time being,” Sandberg said.

Over the next years, Sandberg earned an associate’s degree in business administration from SUNY Orange and CDA certificate from Keystone College, completed schooling in graphic design from the Art Institute online, worked in early childhood education and in public relations, owned Kate’s Cafe in downtown Port Jervis, married, and became a mom.

 

“I truly married my best friend. I had known Joe (Sandberg) since high school, but started dating in 2007 and married in 2009. They say you always marry a man like your father. Well, I definitely did in so many ways. He is so hardworking, supportive, and would do anything at all for his family,” Sandberg said. “Then, although I had been told that there was a high chance I would not be able to get pregnant, our miracle occurred. Ella Grace Sandberg was born on July 25, 2011.”

Over the past year, Sandberg’s symptoms returned. Cortisol tests came back in the 600s — a normal range is 18-50. In February, she underwent a second transsphenoidal surgery, which this time was unsuccessful. She was then placed on medicines to help regulate her cortisol levels. She will complete a six-week proton radiation treatment May 23.

“So far, the medicine treatment has been regulating me, which is great, and the radiation has a 95 percent success rate. The only hard part is that it is not immediate. It can take anywhere from one to ten years to work and kill the tumor cells. The key word with Cushing’s is patience,” Sandberg said. “About six months after treatment is finished, I will start testing to see if there is any improvement and to monitor my other hormone functions due to the effect of radiation on my pituitary gland.”

Having the young mom in Boston for so many weeks of treatment has been tough on the family. She said she greatly appreciates daily contact from her friends and family members, and is grateful that her daughter is being cared for by her husband, parents and in-laws.

“I could never have done this or continue to do this without them,” she said. “I am truly blessed.”

For more information on Cushing’s disease, Katie Onofry Sandberg recommends the Cushing’s Research Foundation  and she would be glad to answer questions herself at Kosandberg@gmail.com. She hopes that by sharing her story, she might bring awareness and possibly help for someone else.

From http://www.recordonline.com/apps/pbcs.dll/article?AID=/20140516/COMM011101/405160302/-1/NEWS

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In Memory of Melinda Smith 1988-2014

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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

Archived Interview with Kathy C, Pituitary Patient

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Kathy was diagnosed with a pituitary tumor in 1991.

At the time the only symptom she was aware of was a severe headache. She had a transsphenoidal resection followed by radiation therapy for 23 days. They said they could not remove all of the tumor.  She is now on Signifor and Cabergoline.

Read Kathy’s entire bio at https://cushingsbios.com/2014/04/27/interview-may-7-with-kathy-c-pituitary-patient/

Listen to Kathy’s Interview here.

Kathy’s Interview is also on the CushingsHelp Podcast

Sarah’s 14-year-old Son

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Fourteen-year-old son, who increasingly exhibits more and more signs of Cushings:

has had frequent illnesses: viruses, strep, pneumonia (two times) , & mono  x’s 6+ years

has had progressively worsening difficulty with learning “fuzzy thinking” and huge memory deficits x’s 4+ years

has had progressively worsening difficulty with emotional control x’s 4+ years

has had progressively increased fatigue  x’s 4+ years

has had progressively increasing central weight gain x’s 4 years

has had puffy eyes x’s 4 years

has had progressively slowed healing of insect bites and wounds on skin x’s 4+ years

has had easily bruised skin and acne x’s 4+ years

has had progressively worsening feelings of depression x’s 3+ years

has had progressively worsening feelings of anxiety with daily activities of life x’s 3+ years

has had stretch marks that faded from purple to flesh colored for 2+ years

has precocious puberty

has advanced bone age

has high testosterone levels

has been labeled as pre-diabetic

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Interview May 14 with Rebecca D (Rebecca D), Pituitary Patient

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Hi Ladies and Gents, my fellow Cushies!

I am a currently mid 20s student living in Toronto, ON, CAN, with big dreams and a big heart. I have been part of this network for a while now and although I’m not always active on the site, I am always eager to spread the word, the love, the support for any of you!!! Just contact me, anytime!

As for myself, I began gaining weight and not being able to control it when I was in my late teens/early 20s.

In 2007/2008 I began trying to figure out what was going on with my current family Doctor with no success. My mother (xoxox) was the smart cookie who saw an episode of “mystery diagnosis” and said “THAT’S MY LITTLE GIRL IN A NUTSHELL!”

Ironically, my family MD at the time AND the one after that said that was a ridiculous idea and it couldn’t be that and simply DID NOT TEST ME.

Luckily, in 2009 when I moved to Toronto for my new degree, I met with a new Doctor who is an admitted “over tester”, however she did help steer me to my Endocrinologist for the diagnosis. It took nearly 2 years of testing, Dex-suppression tests, IPSS, vials of blood gone, MRI’s, CT’s, and too many jugs of 24-hour urine tests we had it narrowed to a pituitary cause but could not locate it on imagine or by approximate location (right, left, etc).

So the wait began as I was referred to my neurosurgeon and the Pituitary Clinic and their hospital until the day came and I went under!

After 6 months of excruciatingly long and painful recovery (which I know any of us who have gone, are going through, or are awaiting to go through where they mess with our signalling organs can understand) I was finally feeling back to myself, my cortisol was in its normal range after tapering off of oral hydrocortisone (oh the irony) and have been feeling pretty great since, Some weight has come off, my stripes have faded (don’t worry, if you look hard enough you can still see them) and I hope to stay on a positive road of recovery! *knock on wood*

I must say, I never expected to the one in a million… and it wasn’t the “one in a million” I expected to be…  You can’t change the past but you can make the best of your future. I’m proud to be a Cushie, I’m grateful to have you all as my “family”, and you are all “one in a million” as well 🙂

Be Proud, Be Strong, Be Fierce… but most importantly, Be Happy

Stay Beautiful xoxox

If you   have questions for our guest, the call-in number is (347) 843-4703
Archives will be available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

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