About Kaila's Komfort
Kaila’s Komfort was founded in 2015 by then 14-year old Kaila Mellos. What started out as a Girl Scout Silver Award Project turned into a passion for touching the lives of others who have been affected by a rare auto inflammatory disease she has. Chronic Recurrent Multifocal Osteomyelitis (CRMO) is a painful auto-inflammatory bone disease. This diagnosis is rare - 1 in a million - it typically is diagnosed in childhood, and by the time people are diagnosed, they have gone through a lot of pain, a lot of testing, and a lot of poking and prodding. Many also have additional secondary diseases - Arthritis, Psoriasis, Crohn's, IBS, as well as others, and they endure a lot of pain. Kaila’s project idea was to create care packages for children and adults around the world that were recently diagnosed with CRMO. After the Award Project was completed, she decided that she wanted to continue with her newfound passion. “I hope to continue to be able to make a difference in the lives of CRMO patients by providing comfort with items that will help relieve pain, provide distractions during medical treatments, help make treatment easier and less painful, and also let them know they are not alone. Since I have personally gone through this, I know firsthand what can bring comfort while traveling this lonely path.”
Watch this short video to learn more about CRMO and Kaila's Komfort |
Watch this video to hear Dr. Hermann Girschick explaining the history, diagnosis and treatment of CRMO/CNO |
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Chronic Recurrent Multifocal Osteomyelitis (CRMO)
What is it?
CRMO (Chronic Recurrent Multifocal Osteomyelitis) is also known as CNO (Chronic Non-bacterial Osteomyelitis) CRMO/CNO is a rare and serious disease. It involves inflammation of one or more bones that can be chronic. Symptoms can come and go. CRMO/CNO is treated by pediatric rheumatologists.
Inflammation is a normal process. It is the way our immune system protects our bodies from infections and germs. It causes pain, redness, and swelling. In CRMO, however, there is no infection. Instead, the immune system wrongly attacks normal bone. This causes inflammation.
The cause of CRMO/CNO is unknown. Genetic and environmental factors may play a role.
CRMO/CNO is a “diagnosis of exclusion.” This means that other diseases must be ruled out before the diagnosis can be made. Generally, many tests are required, such as blood tests, X -rays, bone scans, MRI, and often a bone biopsy.
For more information on CRMO, please click here to be taken the the crmoawareness.org website.
Inflammation is a normal process. It is the way our immune system protects our bodies from infections and germs. It causes pain, redness, and swelling. In CRMO, however, there is no infection. Instead, the immune system wrongly attacks normal bone. This causes inflammation.
The cause of CRMO/CNO is unknown. Genetic and environmental factors may play a role.
CRMO/CNO is a “diagnosis of exclusion.” This means that other diseases must be ruled out before the diagnosis can be made. Generally, many tests are required, such as blood tests, X -rays, bone scans, MRI, and often a bone biopsy.
For more information on CRMO, please click here to be taken the the crmoawareness.org website.
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Kaila's Komfort once again hosted the annual CRMO Awareness Walk-A-Thon/5K in October 2022 (CRMO Awareness Month). This year's event was like in the past, where friends participated virtually from wherever they were in the world, some joining a group in their local area. This format allowed individuals to simply run/walk/jog/bike a 5k from wherever they were whenever it was convenient for them during the week of October 9-16. Thank you to everyone that participated to bring awareness, show support for the CRMO community, and raise much needed funds to CRMO family support, education and research.
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