Meet Sheila and Jim! They’ve shared their family’s journey with the rare rheumatic disease, CRMO, below.

Sheila and Jim live in Qualicum Beach on beautiful Vancouver Island. They have three sons, two of which live with Chronic Recurrent Multifocal Osteomyelitis (CRMO).

Nolan was diagnosed with CRMO at the age of five in Kindergarten. It started with a sore lump on his clavicle and he was fighting a cold at the time too. We went to the GP who sent Nolan for lab work and immediately to the hospital in Nanaimo where we stayed for 3 days.

Having many tests, x-rays, MRIs, scans, etc. was all very stressful and emotionally exhausting for me. I was dealing with this alone as my husband was away. Nolan was apprehensive as well. We had no answers still… which was concerning. The specialists at the Nanaimo Hospital made arrangements for us to go to BC Children’s Hospital Orthopedics. The doctor diagnosed Nolan with CRMO and from there went to the Pediatric Rheumatology Clinic.

I could not believe what was happening, I had never heard of this disease! 

That’s how our journey started.

Blair was diagnosed after an injury to his arm and wrist at the trampoline park when he was about 13 yrs. old. What we thought was a fracture turned out to be CRMO. Again, I was baffled, how is this happening? With the statistics saying it was a rare disease? Could it possibly be genetics?

CRMO has caused emotional stress. Nolan has missed school days and we’ve spent lots of time going on ferries to Vancouver. Out of all of this, we make it fun and try to do something exciting and different each time we go to the city of Vancouver!

Nolan during a recent family trip to Tofino, BC.

In addition to the treatments prescribed by our rheumatology team, we’ve also used Naturopaths, chiropractors, and massage therapists. I do my best to promote healthy eating and try to avoid foods that cause inflammation for the boys, avoiding triggers, encouraging exercise and a good night’s sleep.

It’s not perfect: but the boys are a lot better. Their intravenous use of bisphosphonates helps when they have flare ups. As a family, they like the outdoors, hiking, walking, fishing, bike riding, and traveling.

  • Blair is 18 yrs. old and is presently doing an electrical apprenticeship with a local company. He is a skier and likes to surf the west coast, as well as fish and ride his quad in the local mountains
  • Nolan, 14 yrs. old is a grade 9 student attending online school. He loves riding his quad and mountain biking with friends, hiking, and swimming in the summer.

We have a positive outlook on life, count our blessings, say our prayers, and live one day at a time. Our boys have been so strong, especially Nolan, being so young when he was diagnosed.

I understand what other parents face. I have walked the path.

On Saturday, April 23rd at 2:30 pm PST/5:30 pm EST, hear directly from Sheila at our CRMO Webinar alongside Dr. Polly Ferguson, Pediatric Rheumatologist at the University of Iowa Stead Family Children’s Hospital. Bring your questions to the live Q+A. Register today!