Danielle Ziatek married her long-time boyfriend Pete in 1997. As a newlywed, she had dreams any young bride might have; a house, children, and a faithful husband by her side.
As she said her vows that sunny day in August overlooking the beautiful Monterey Bay, she had no idea that a potentially fatal disease was stirring within her.
Danielle was athletic and full of energry through her childhood and young adult life. Friends knew her as vibrant, happy, and fun.
Danielle before the onset of symptoms
In 1995, Danielle had begun to see changes in herself. Weight gain, irregular menstruation, depression, and fits of rage were dismissed by her doctors as hormonal issues. She was prescribed birth control, but Danielle knew inherently she was not well.
“My face kept ballooning up. Whenever I would look in the mirror, I knew something was wrong,” she said. “I would bring pictures to my doctors, but no one could give me answers.”
Frustrated with being put off by doctors, she scheduled a physical only to find that her cholesterol was a high 290.
“The clinic called and asked me if I was overweight and smoked because for a 29-year-old woman, they couldn’t believe my cholesterol could be that high.”
After several failed attempts at getting pregnant, doctors discovered that she had Polycystic Ovarian Syndrome, a condition in which high insulin levels shut down the reproductive system. Doctors believed that this diagnosis explained her weight gain, depression, and cholesterol issues.
With the help of an infertility specialist, Danielle later was blessed with three boys after two successful pregnancies through in vitro fertilization.
During her pregnancies, Danielle was given magnesium to stop contractions early on in her pregnancy. She later discovered that the magnesium decreased the cortisol in her body, the hormone that would later be the contributing factor to the inflammation she saw in her face.
After the birth of her twin sons in 2005, Danielle would spend the next four years seeing doctors, nutritionists, allergists, and weight specialists trying to determine the cause of her weight gain.
In October 2007, while under the care of Nutritionist Leslie Oldershaw, Danielle was asked to do a saliva test. Her test results showed high cortisol in her system. This became her first red flag that something was clearly wrong.
Over the next few months, she went on a special allergy elimination diet. She successfully lost 16 pounds, but not without extreme consequences. Her hair began to fall out, her face grew increasing large, and her skin became translucent, bruising easily.
“I remember waking up on the morning of March 3, 2008 and looking in the mirror in horror,” she said. “I looked like I had swallowed another human being.”
Danielle on March 25, 2008 before surgery
Frightened by her image in the mirror, she immediately called her nutritionist. Oldershaw told Danielle that it sounded like she the look of a Cushingoid. This was the first time anyone had suggested the possibility that Danielle’s symptoms were the result of Cushing’s Disease.
Danielle followed up with endocrinologist Dr. Peter Linfoot. After a thorough physical exam, a 24-hour urine cortisol test, and an MRI, he gave Danielle both welcoming and frightening news. Danielle had a pituitary tumor which would need to be removed.
The pituitary, located at the base of the brain, is often referred to as the "master gland" as it controls hormone functions such as our temperature, thyroid activity, growth during childhood, urine production, testosterone production in males and ovulation and estrogen production in females.
Although terrified at the prospect of having brain surgery, Danielle finally had answers to explain her bizarre symptoms and hope for treatment.
Within weeks, Danielle underwent surgery to have one quarter of her pituitary gland removed.
In less than a year’s time, Danielle was back to her old self. She lost 47 pounds, no longer suffers from depression, and enjoys her family and hobbies again. Although on a strict regime of hormone replacement and supplements, she’s thankful to have found the cause of her illness before it took her life.
“My life has been completely changed since the surgery,” she said.
“I had to walk through the fire to come out the other side, but it was worth it.”
Danielle has become a vocal activist in Cushing’s awareness, reaching out to others who suffer in silence. She is an active member of the Cushing’s Support and Research Foundation, a non-profit organization dedicated to supporting patients with Cushing's and their families.
“I felt so alone. I had only one person out there who I could call and she would drop everything for me,” said Danielle.
“I just don’t want anyone to feel as alone as I felt. If I can help even one person through it, then this has all been worthwhile.”
Danielle one year after pituitary surgery
Danielle has helped more than just one Cushing’s patient. I had the honor of joining Danielle at Eddie Papa’sto meet Cushing’s survivors Julie West, Julie Schenck, and Danville middle school teacher, Michelle Ross.
Although it had been months since the women last met, they reconnected as if they were family. The ladies were eager to share with me their struggles, triumphs, and current treatments.
“Cushing’s Disease changes you,” Michelle Ross said. “You physically become a monster.”
The ladies shared with me their physical symptoms including hair loss, facial and chest hair growth, fatty tissue deposits around the waist and upper back, swollen face, open sores, and thin, fragile skin. Other symptoms they collectively experienced included insomnia, diabetes, reproductive issues, high cholesterol, increased blood pressure, and bone loss leading to fractures. Anger, depression, and social phobias were also common ailments.
“Doctors often misdiagnose or overlook symptoms based on the three F’s: female, fat, and forty,” said Julie Schenck.
Danielle currently is an active participant on numerous Cushing’s Facebook sites helping other patients that suffer from the disease as far away as Costa Rica. She is also working on developing a Cushing’s support group that has been approved and financially backed by Stanford University.
Danielle hopes her awareness efforts will encourage primary care physicians, nutritionists, weight loss centers, and pediatricians to educate themselves about the symptoms of Cushing’s Syndrome which so easily mimics other illnesses.
For information on Cushing's Syndrome or help finding a specialist, contact the Cushing's Support and Research foundation at CSRF.net.