Simply BeCause CRMO is near and dear to our hearts
The human skeleton is comprised of 206 bones. Of these bones any number or combination can be affected in patients with CRMO, Chronic Recurrent Multifocal Osteomyelitis which is a rare auto-inflammatory disease that involves inflammation in bones which can lead to bone lesions and potential fractures. CRMO is a chronic condition with the onset of symptoms developing in children and can potentially last a lifetime. Symptoms, such as severe pain, fever and swelling can come and go. With CRMO, the inflammation is not due to an infection but instead, the immune system wrongly attacking normal bone. This inflammation, if left unsuccessfully treated can move around the body to different bones. It is not known what causes CRMO, but it is thought to be genetic in nature. This is a very rare disease, affecting 1 in 1 million girls and 1 in 6 million boys. Diagnosis can take months to years as it is a diagnosis of exclusion from all other possible causes. Most patients undergo many tests including blood tests, x-rays, MRI's and bone biopsies. Once everything else is ruled out and CRMO is diagnosed depending on the severity patients are treated with prescription NSAID's, forms of Chemotherapy, Biologic Drugs or a combination of all of the above. Every patient is different to what helps and a certain medicine may work for a while and then stop. A Rheumatologist monitors CRMO patients and they generally have whole body MRI's twice a year to monitor current lesions and look for new potential areas. CRMO can go into remission with the assistance of medicine and therapies. For these children and adults, CRMO is monitored for most of their lives.
CRMO is under-recognized and therefore here at Simply BeCause we want to help educate people about this rare and devastating disease. It is near and dear to our hearts. Our son is on his own journey with CRMO. At the age of 15 months old, he woke up one morning with a fever and would not walk. This was the start to almost a year of continual doctor evaluations, tests scans, etc, through almost every medical specialty, a rapid decline in his health and many hospital stays. Once he was diagnosed with CRMO and put on the first line of treatment was the first time in months that our son was able to start to be a normal kid. Along the path it has been a roller coaster of medicine and therapies that worked at first but then stopped. The inflammation traveled among several different bones. We are still in a phase of trying to figure out how to balance out his medical needs to try and stay on top of this disease. As parents it is heartbreaking to watch your child and not be able to directly help them or take away their pain. This is a real struggle for CRMO patients and caregivers.
This is why here at Simply BeCause we are donating a proceed of every purchase to CRMO Research. We hope that you will support this cause, Simply BeCause.
If you would like to learn more about CRMO please see the websites below.