Did you know you have a higher chance of getting struck by lightning than getting CRMO?
Did you know you have a higher chance of getting twins, triplets, or quadruplets than getting CRMO?
Did you know you have a higher chance of getting drafted to the NFL, or even the NBA than getting CRMO?
Chronic Recurrent Multifocal Osteomyelitis is 1 IN A MILLION!
MY STORY WITH CRMO AND ERA
In the month of February in 2020, I had the worst sleep ever and that continued for a couple of days. One night my parents decided that I should go to the emergency department at the hospital near us. When I got there I got some x-rays done, and a blood test done. I had many follow up appointments with many doctors. I have had one local MRI and one full body MRI. I was diagnosed with CRMO after a couple of the follow up appointments at the age of eleven. After I was diagnosed, I tried many medications for example; ibuprofen, naprosyn, indomethacin, and methotrexate, and pamidronate. These medication did not work well for me because the doctors had not found out that I had Enthesitis Related Arthritis (ERA).
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In the month of March in 2021, I was diagnosed with ERA in addition to CRMO. My entheses became inflamed too over time. I was on a medication called Humira/Adalimumab but the injections were way too painful, and to get that every 2 weeks, was just too much for me. So currently I am on a new medication named Remicade/Infliximab which has been working really well for me.
The image to the left shows a care package that Kaila Mellos (the founder of Kaila's Komfort) gave me to cheer me up.
WHAT IS CRMO
CRMO (Chronic Recurrent Multifocal Osteomyelitis) which is also known as CNO (Chronic Non-bacterial Osteomyelitis) is a rare and serious autoinflammatory disease.
CRMO is inflammation of one or more bones. Inflammation is a natural process that involves your white blood cells fighting infections but in CRMO/CNO, your blood cells wrongly attack the bone which causes lots of pain. Symptoms can come and go. The cause of it is unknown. A small fraction of people with CRMO/CNO have a genetic component involved. Getting diagnosed can take a long time. The median time from when the pain starts to when the patient is diagnosed is around 15 months. It mostly affects children and adolescents. There is currently no standard treatment for CRMO/CNO. For most people, they go into remission after taking certain medications such as; NSAIDs (Non Steroidal Anti Inflammatory Drug), biologics, and bisphosphonates.
WHAT IS ERA
ERA stands for Enthesitis Related Arthritis. It is when your entheses (tendons and ligaments that attach your bones together) are inflamed. ERA is a type of Juvenile idiopathic Athritis (JIA). Around 1 in 1000 people have JIA. ERA causes lots of pain and discomfort just like CRMO. Sometimes the joints that are inflamed swell up. It is mainly treated with biologics. ERA is ussually found in 8 - 15 year olds and effects more boys than girls.
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If you want to find out more information about Juvenile Idiopathic Arthritis, click the button below!