Avery W.

Illinois, United States

CRMO warrior

Years back my daughter started having symptoms of severe pain and immobility. After numerous Dr appointments, missed school, practices and games, she was diagnosed with Chronic Recurrent Multifocal Osteomyelitis. CRMO is also known as CNO (Chronic non-bacterial osteomyelitis). CRMO is a rare and serious disease. It involves inflammation of one or more bones and can be chronic. Symptoms can come and go. CRMO is treated by pediatric rheumatologists, which we see an amazing one at Lurie's Children's in Chicago. It causes pain, redness, swelling and sometimes immobility. Avery's immune system wrongly attacks normal bone causing inflammation. CRMO is under-recognized, which means many doctors may not be familiar with this disease. Currently there are about 400 cases reported with CRMO. Some children with CRMO have an increased risk of developing psoriasis, inflammatory bowel disease (Crohn’s Disease or Ulcerative colitis), arthritis and eye disease (uveitis). Researchers have found that certain chemicals in the blood involved in inflammation are increased and may contribute to the disease. In CRMO disease, the abnormal cytokines cause the osteoclasts to become too active and break down more bone than they should. This causes inflammation and can lead to bone damage and pain. Fractures may occur when there is too much breakdown of bone. Avery has had to be out of school often for monthly infusions, getting sick more frequently due to being immunosuppressed and leaving her soccer team, which takes away a source of activity that she still needs. She is needing her own way of still engaging in low impact activity and this would be amazing. Avery wants to be a peds rheumatologist herself to be able to help other children who face this in the future.



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