Written by a Child with CAID ♥
Did You Know……….??
Did you know that I am one in a million? Now you are probably thinking has she won the lotto or did she win the Nobel peace prize? Has she discovered the solution to world peace? Unfortunately my being one in a million is not something you would celebrate. My lotto win is a little more like being Katniss Everdeen winning selection to participate in the Hunger Games.
Chronic Recurrent Multifocal Osteomyelitis (four very long words) is why I’m one in a million. It’s a rare genetic bone disease that affects one in a million kids. It’s not a contagious disease so please don’t step back. It’s inside my bones. There is no way out. It’s trapped!
Chronic recurrent multifocal osteomyelitis or cromo as I call it is a rare auto inflammatory disease that makes my white cells think that my bones are the enemy. So basically my body is attacking itself.
I started having lesions in my leg then it moved up to my jaw and back down again! What are Lesions? They’re like a growth or tumor on the bone. Every few months one of these lesions will flare up. It starts by tingling in my bone but as the day goes on it begins to hurt more and more and it feels like I’m being stabbed with a thousand mini knives. Kind of indescribable pain really. When the lesion in my jaw flares up it can swell to make me look like a one sided chipmunk – very attractive!
I found out I had this disease two years ago when I was 10 years old. My jaw swelled up and I had to have several x-rays, cat scans and then finally a bone biopsy. (A fun little operation where they remove a tiny bit of the bone and stick a whole lot of needles in you. Thank goodness for general anesthetic.)
Dr Dance, my surgeon, also known as Dr Floppy Hands (because he talks with his hands like this) cleverly diagnosed me with CRMO
after looking at the bone biopsy.
The disease is quite difficult to diagnose so some kids , as young as 3 and 4, have lots of pain before the doctors can figure out what to treat them with. There are many different treatments but anti inflammatories work best. Nurofen is my saviour. It helps me control the pain.
There are quite a few other kids who have this disease a lot worse than I do. I belong to a support group of kids with CRMO, some of who cannot walk because the disease is in their spine, or who have to have injections every day to take away the pain. Fortunately my condition is not as severe.
In the United States, where the support group is based, there are a number of fund raising events to help raise awareness of the disease. These events fund research into finding out the cause and the best treatments of childhood auto inflammatory diseases.
This Group is called Stop CAID NOW! CAID, C.A.I.D stands for childhood auto inflammatory diseases. CRMO is in fact a CAID! So many complex new words to learn!
This group helped me to realize that I am not the only person with this disease and that there are quite a few other “one in a million kids” out there all trying to cope with pain and live their lives as normally as possible. It has been kind of fun to connect with them and to talk to them about how they deal with the disease. Kids from the UK, Europe, the US and a couple of us Aussies all write to each other about our experiences.
Sometimes I am in lots of pain and admittedly it does sometimes make me cry but people with any disease like CRMO have to soldier on, stand tall and be brave. Why did I get this disease? I’m still asking that question. It doesn’t really matter why I have it though. What matters is how I cope with being one in a million.
And I bet you all thought I won the lotto!
by: Miss Julia Drummond