Rare Disease Devastates Dixon Teenager, Family

She walked slowly, but with a purpose, through the halls of UC Davis Medical Center in Sacramento. It’s not the place where 18-year-old Amber Oerding wants to be on a Friday night, but she has to be.

But while the halls of the medical center were void of its usual dwellers – nurses, other patients, medical staff and doctors – it was filled the people who have loved and supported Amber throughout her life-long battle with Hashimoto’s Thyroiditis, a thyroid condition in which Amber’s immune system attacks her thyroid.

No thyroid talk this time however during Amber’s visit to UC Davis Medical Center in mid August – her doctors were looking for something else.

, she was battling her thyroid condition with medicine and was considering having a surgery that would remove her thyroid. Since then, Amber’s pain level has dramatically increased, to the point that it sent her to the emergency room at Sutter Davis Hospital.

“I’ve always been in pain, my whole entire life,” Amber said. “The closest I have gotten to being pain-free is when they gave me morphine (in the ER).”

This was not the pain that Amber has grown accustomed to, a pain that begins in her stomach area and spreads throughout her body, she said. While doctors have known about Amber’s condition, the rise in Amber’s pain level prompted them to approach Amber’s ailment differently.

They ordered an MRI for Amber in search of a possible brain tumor. The radiology department at UC Davis Medical Center usually does MRI scans on patients during the day, but in special circumstances, such as Amber’s, technicians perform the scans during the evening.

For Amber’s MRI her mother Sharon, father Steve and younger brother Austin all piled into the family’s car and made the drive from their Dixon home to the medical center.

While Sharon and Austin patiently waited for scan to be over with, Steve went inside the MRI scan room with his daughter to hold her hand and comfort her.

Within a half an hour, Amber and her family made the short walk from the hospital’s radiology wing to their car, parked in a nearby carport. The MRI was over, but the waiting had just begun.

Another joins Hashimoto

Amber’s MRI showed no tumor.

“It’s a relief and kind of a disappointment,” said Sharon Oerding, Amber’s mom.

“I’m glad it wasn’t my brain,” added Amber. “It’s also hard because we don’t know what it is.”

“They are running difficult test,” Sharon said. “They are going to do more testing, nerve testing, they asked about genetic testing.”

While Amber prepares for a series of complex tests (from now throughout the end of October), a team of UC Davis specialists working with Amber has given her a sense of what might be increasing her pain – in addition to her Hashimoto’s Thyroiditis.

“We actually have a name of what they are pretty positive Amber has,” Sharon said. “Mitochondrial Neurogastrointestinal Encephalopathy (MNGIE). I don’t understand a whole lot about it. It’s extremely rare; they said only 70 people have it. There is no cure.”

According to Genetics Home Reference web site (a service of the US National Library of Medicine): “MNGIE disease is a condition that affects several parts of the body, particularly the digestive system and nervous system. The major features of MNGIE disease can appear anytime from infancy to adulthood, but signs and symptoms most often begin by age 20. The medical problems associated with this disorder worsen with time.”

“I guess this condition, with the gastrointestinal, comes other stuff, she has to go see a neurologist,” Sharon said. “So basically, this can be fatal. It depends on the severity of it how bad the gene is mutated.”

Amber’s dream of becoming a teacher at least for now, must be put on hold. She dropped out of Woodland Community College, where she was taking an English class, because of the pain. She is unable to drive, is bed-ridden for most of the day, and visibly looks thinner and weaker.

The notion that her daughter can die from this disease, if it’s really what Amber has, has shaken the Oerding family to the core.

“It gets to the point where you do lose faith, because ‘Why, why are you letting this happen to her?’” Sharon said. “She’s innocent and she’s just a sweet person, she’s so loving and caring.”

Amber, who has known pain for most of her life, remains committed to getting better, moving on with her life.

“I think by now I’m ready to do whatever it takes to fix me,” Amber said.

We will continue to follow Amber’s journey, as she attempts to overcome her disease.