Teen works through his rare disease

This photo shows Bryce Fisher in his Boise Bronco gear. Bryce has a rare disease in which his immune system is attacking his bones.

FRUITLAND — At a time when he should be going to school and being active, Bryce Fisher, of Fruitland, can do neither. This is because he has a very rare disease that is making it hard to get around. It keeps him inside his home, away from other people.

Bryce, now 13, has been dealing with chronic recurrent multifocal osteomylitis, a rare disease in which the immune system attacks healthy bones, said his mother Carolyn Anderson. The disease can cause a number of problems with the skeletal system, including inflammation, bone deformity, broken bones and intense pain. The disease strikes one in 1 million people world-wide.

Bryce’s condition was discovered about a year-and-a-half ago, just before he turned 12, when he crushed a vertebra in his back while jumping on a trampoline, Anderson said. It took about a full year to exclude cancer and test everything else before the diagnosis could be confirmed.

Proper diagnosis may include blood tests, X-rays, bone scans and MRIs, according to information from the Childhood Arthritis and Rheumatology Research Alliance, provided by Seattle Children’s Hospital.

Flare-ups of the disease can occur anywhere in the body, and Bryce has two more vertebrae that are starting to collapse, Anderson said. This is addition to the one that is now completely gone.

“It is a lifelong disease,” she said, and not one that will go away as he grows up.

There are several additional health issues that come with a CRMO diagnosis, Anderson said. They include Crohn’s/colitis, asthma, SAPHO (a skin, joint and bone disorder) arthritis and rheumatoid arthritis, she said. Eczema is another possible issue, Anderson said, and they have to be very careful with caring for Bryce’s teeth.

He goes through infusions of strong medications in Seattle, where he is being treated by Dr. Yongdong Zhao, a pediatric rheumatology and CRMO specialist at Seattle Children’s Hospital. The medicine has its own side effects. At first the infusions were bi-weekly but they are now monthly.

Bryce is limited on what he can take to control his pain, because of the relationships to other medications he is being given, and the pain medication he is taking now only helps somewhat, his mother said.

“There is not much else he can take,” she said.

In addition to the medications he receives, Bryce has ongoing MRIs to track the flare-up of the disease.

Further serious deterioration of his spine could lead to reconstructive surgery, Anderson said.

“He is lonely,” his mother said of Bryce.

The teenager can’t go outside and is not able to see his friends because his immune system is compromised, she said.

“He feels isolated,” Anderson said.

Bryce is in seventh grade, and while he cannot go to school, staff is working hard to help him keep up with classes, she said, and he has some school books at home.

Some CRMO sufferers end up in wheelchairs, Anderson said, but Bryce is still able to walk. However, he is moving slower and is now walking with a limp.

They are not sure when Bryce’s next appointment is, but just before a recent flight on an Alaska Airlines plane, he got special attention when an attendant took off her first wings off her uniform and gave them to Bryce. He also got to sit in the co-pilot’s seat, wearing cap and jacket, Anderson said.

Besides Bryce’s mom, his family includes father, Jason Fisher, half-brother Kodi Fisher, 21, in the Army; brother AJ Fisher, 14; and brother, Chance Fisher, 11.

To help the family defray their costs of treatment and travel a fundraising page has been set up online at the Youcaring website in Carolyn Anderson’s name.

Larry Meyer is a reporter for the Argus Observer.

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