09/05/2021
Our beautiful daughter Ellie was diagnosed with Chronic Recurrent Multifocal Osteomyelitis in 2020. It's more "commonly" known as CRMO. It's an extremely rare autoinflammatory disease affecting just 1:1million people.
CRMO can attack multiple bones causing inflammation, weakened bones, and excruciating pain.
Ellie is under a team of consultants at Bristol Children's Hospital with the goal to bring Ellie into remission. As the disease is so rare, very little medical research has been done, so experimenting for the right treatment can be difficult, painful, and very emotional.
Ellie has joined a clinical research group to help similar children in the future.
As a parent, there is nothing worse than see your child roll around in pain, day after day. Typically, you would reassure your child the doctors have the answer, but with CRMO the doctors don't.
We are the blind being led by the man with the cane. Trialing various medications and treatments with the hope to relieve some pain.
I hope this page will bring others like Ellie together, along with the parents, carers, and supporters. Please spread the word and us on our journey. Ellie's Dad - Paul.
Further reading below with credit to CARRA Research Alliance.
What's Happening?
Your immune system cells produce proteins that send signals to make inflammation.
There are two main types of cells needed for bone development in children. One type of cell, osteoblasts, makes the bone. The other, osteoclasts, breaks down the bone. In normal bone development, these two cells work together to maintain healthy strong bones.
In CRMO/CNO, the immune system proteins make the osteoclasts work too much and the result is that they damage or eat the bone. This causes bone pain with or without swelling. Subsequently, fractures may occur. Even if the pain is better with treatment damage may still be occurring. Children with CRMO/CNO need long term follow up with a pediatric rheumatologist.
