EYEWITNESS NEWS (WBRE/WYOU) — Several viruses are spreading this time of year making many of us sick, but there is a non-viral disease that can make you feel sick for a long time, and often goes undiagnosed.
That something is called systemic mastocytosis, or SM for short. It can make you feel miserable, and be downright debilitating. It’s why getting the proper diagnosis is such an important step toward managing the condition.
“We had no idea what was going on. It was a very frightening time,” said Kristine.
63-year-old Kristine was a child when she says she first dealt with an acute allergic reaction called anaphylaxis. It would only get worse.
“I started having other symptoms such as hives, diarrhea, itching, and fainting,” she told Eyewitness News
What triggered her episodes remained a mystery until she was 35.
“I had blood work as well as a bone marrow biopsy and finally it was confirmed that I had systemic mastocytosis,” Kristine explained.
SM is a rare disorder that causes an excess buildup of mast cells, a type of white blood cell, in the body.
Roughly 1 in 10,000 Americans has SM. Since the symptoms often range from skin disorders to GI issues, many people with SM walk around undiagnosed or misdiagnosed by their healthcare team.
“They might think it’s a whole host of food allergies. They may feel the flushing is an endocrine disorder. So, you really have to look at all of those symptoms together to start thinking about that diagnosis,” said Patricia Lugar, MD Allergist/Immunologist.
Getting the proper diagnosis can be life-changing even if the symptoms don’t entirely go away.
“I work very closely with my specialist and occasionally my treatment plan does have to be tweaked. I do take multiple medicines to help manage my symptoms,” Kristie said.
And like so many SM patients, she avoids certain foods and scents. Even though the symptoms may differ from patient to patient, Kristine wants anyone struggling with SM to know this.
“It’s a challenge but I still have a lot of joy in my life and I did decide immediately after my diagnosis that I was not going to let this disease rule my life,” Kristie emphatically said.
Kristine is active in the SM community and involved with patient advocacy organizations.
Head to this website to learn more about sm and the help that is available for patients.