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.
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