According to a story from messenger-inquirer.com, ten year old Abrielle Haynes of Sacramento, CA is often described as a ‘china doll’ by both family and friends. This is because she has a rare bone disease called chronic recurrent multifocal osteomyelitis (CRMO). The child was first diagnosed two years ago. Since then, the Abrielle and her mother Summer have been doing their best to spread awareness about the poorly understood illness.
About Chronic Recurrent Multifocal Osteomyelitis
Chronic recurrent multifocal osteomyelitis is a rare disease affecting the bones that is primarily characterized by inflammation, lesions appearing on the bones, and pain. While the origins of the disease aren’t entirely clear, it is often described as an autoimmune or autoinflammatory disease, meaning that it is the result of the immune system mistakenly attacking healthy tissue. It presents similarly to standard osteomyelitis (infection of bone) but without the presence of an actual infection. Diagnosis is difficult and many other diseases must be ruled out before one can be made. Symptoms include chronic pain, bone inflammation, bone overgrowth, fatigue, swelling, arthritis, breakdown of bones, weight loss, and other bone abnormalities. Treatment is primarily aimed at controlling inflammation; treatment includes non-steroidal anti-inflammatory drugs (NSAIDs) and steroids. Patient response to these approaches is inconsistent. To learn more about CRMO, click here.
Since being diagnosed, Abrielle has a tried a variety of treatments in an effort to prevent the disease from weakening her bones. The frequent changes to treatment and the difficulty in finding one that helps her has been discouraging for the girl, but her current treatment (double strength doses of adalimumab) has helped prevent her symptoms from worsening. Still, it isn’t possible for Abrielle to do all of the things that a typical ten year old might do.
Abrielle was first diagnosed with CRMO after complaining about pain in her legs. While Summer first thought it was just growing pains, the pain was soon so debilitating that the girl wasn’t able to walk on her own. X-rays revealed 22 lesions on her bones that doctors that was cancer at first. It ultimately took six months from the appearance of symptoms before Abrielle was officially diagnosed.
While progress is being made in her case, Summer says that getting involved in online CRMO support groups has been a great help also.