Putting the picture together Woman helping others with rare disease

Imagine for a moment that you’re young and healthy, happily married and a successful career woman and mother. Everything seems to be going just right.

Imagine for a moment that you’re young and healthy, happily married and a successful career woman and mother. Everything seems to be going just right.

Then one day you start to feel a little bit off, and the next day even worse. Before you know it, your body is completely falling apart, ravaged by one malady after another. You’re diagnosed with diabetes and hypertension, you start to lose your hair and gain weight at a frightening pace.

To make matters even worse, no one is absolutely certain what’s going wrong with you. One doctor seems sure it’s one thing; another believes it’s something else, and the only real advice you get is to eat right, exercise, and lose some weight.

Nothing you do seems to help, though, and it’s beyond frustrating because there’s no good reason for you to feel as sick as you do.

Snoqualmie resident Stacey Seitz lived this very nightmare for well over a decade before finally being diagnosed with a brain tumor and Cushing’s disease.

“It wreaked havoc on my whole body,” Seitz said.

Cushing’s disease is an endocrine disorder caused by a tumor in the pituitary gland. The malfunctioning pituitary gland then causes the adrenal gland to release excessive amounts of cortisol into the blood stream.

Symptoms include rapid weight gain, excess sweating, impotence, infertility, depression and anxiety. If left untreated, Cushing’s can lead to diabetes and heart disease, and is fatal.

Seitz experienced just about every symptom of Cushing’s, but because the disease is extremely uncommon and most doctors will never encounter it, Cushing’s is difficult to diagnose.

Many who have Cushing’s are first diagnosed with disorders like diabetes and heart disease, but those are really just symptoms and not the root cause.

Seitz went a decade without being properly diagnosed because no one ever thought to go beyond the obvious problems.

“Everything I had could be excused by something, but no one ever put the big picture together,” Seitz said.

This was especially difficult for Seitz because she had tried everything to get better, such as living on a strict diet to control her weight, which at one point shot up by 30 pounds in a single month. Nothing ever worked and she only seemed to get worse.

“You can imagine how frustrated I got,” Seitz said.

Her frustration would soon end, though. While living in Idaho in 2007, Seitz connected with Dr. Richard Christensen, who immediately considered Cushing’s as a possible cause. Not knowing enough about the disease himself, Dr. Christensen directed Seitz to doctors William Ludlum and Marc Mayberg at the Swedish Neuroscience Institute in Seattle. Seitz and her family then decided to move to Snoqualmie in the summer of 2007 to pursue treatment.

In October of last year, Seitz underwent a successful surgery to remove the tumor and has been steadily improving, though it could take another two years before she has fully recovered from the effects of Cushing’s.

Seitz’s prognosis is good, though, and she’s happy to be on the path to recovery.

“I truly have my life back,” she said.

Part of getting her life back is being able to do something productive with herself again. Seitz, a former mental health counselor, has begun working with the Magic Foundation, a non-profit organization that provides support to families with children affected by a multitude of growth disorders, including Cushing’s disease.

Seitz, who knows first-hand just how frustrating Cushing’s can be and how alone in the world it can make you feel, does what she can to provide comfort and inspiration to those in need.

“I feel like it’s the least I can do,” she said.

After more than a decade of dealing with illness, uncertainty, treatment and healing, Seitz has very mixed emotions about her ordeal.

“I’ve gone through a range of emotions,” Seitz said. “It makes me feel kind of sad that I was sick for that long.” At the same time, she’s survived it all and now has a future she can actually feel positive about.

“I feel really blessed every day,” she said.