Letter from the Editor

When I look at our world I see culture, health, education, occupations and more spiraling downwards. People become more prone to obtain disease, fatal ones too. I also see our world held together by one hand, the hand of hope and determination. The people that make up this hand are hard to find but they are there, sometimes unnoticed, but none the less, there. I'm not proclaiming to be anything that special but i still felt obligated to make a support site. There is nothing wrong with only wanting to be with people that understand you and that you have stuff in common with. But as this world spirals this becomes harder, each day we are forced to be with people we may not necessarily like. Something to ease the pain, was the object of this blog. I'm sure that it won't make a major difference, but to those who are affected i hope that they are blessed.
As you may have read in my post about the blogger, i have this disease. And to many of you this may sound like just another boring medical article, but i hope that it affects you in other ways than that. I know it did for me. I enjoy my topic, and maybe that makes me weird, but i don't care. I chose to research CRMO, because it affects me and the people around me. My final destination would be to learn more about this topic and to get other perspectives on fighting it.
So far I have learned a lot, and I hope to learn a lot more. if you have this disease or not, I would hope that you could find shelter from the storms of the world in this one place. Please read more about this disease, and my encounter with it.

Information on my topic

Chronic recurrent multifocal osteomyelitis

Chronic recurrent multifocal osteomyelitis is a bone disease.

Chronic-pain begins 3-4 weeks after onset
Recurrent-It reoccurs or returns
Multifocal-it appears in numerous parts on the skeleton
Osteomyelitis- A bone inflammatory disorder

I figured out that Osteomyelitis has been around for
a while but I am not sure how they treated it. One of
my doctors informed me that people used to think it
was just growing pains. There has been no found
difference in the bones of a CRMO patient to a normal
person. Because this disease is rare there were not
enough patients affected to prove any similarities
among them.

In case you are extremely confused on what happens to your bone
then i will attempt to explain. When germs get into your body it is
possible that they may travel down ones blood stream and attach
to the bone. Naturally, the white blood cells attack the invader to
defend your body. After a long time when the germs have been
killed, the white blood cells get confused and begin to attack the
bone instead.

So far most of the information that i have gathered
has been about the diagnosis and symptoms of CRMO.
Such as, Symptoms are pain, swelling, redness of the
site and possible fever. If a fever occurs seeing a
doctor would be very necessary. If you are beginning to worry
please don't it is a very rare disease and there are treatments
available. If your symptoms agree with this discription, please
notify a doctor instead of jumping to conclusions from this article.
Online, I found an article about CRMO written by Dr.
Girschick. Here I learned about the areas most
affected. (i.e. mandible, clavicle, femur, calcareous,
and ankle) I also learned that symptoms include;
re merging pain, local swelling, and presence of
inflammation shown by MRI. Inflammation being the
swelling of the bone The hard part is that there
is no positive or negative test to know if you have
CRMO.
Other types of Osteomyelitis (the O in CRMO) are;
Unifocal non recurrent
Unifocal recurrent
Multifocal nonrecurrent
Multifocal recurrent (CRMO)
Osteomyelitis is more common than CRMO and is an infection of the bone.
Having Osteomyelitis can lead to CRMO, this happened in my case.

In this article, the article by Dr. Girschick, I learned that
bronchial infections might be a possible trigger for
a relapse. Dr. Girschick said that, “Most number of
bone lesions ever found was 63.” Multiple lesions in one
bone is rare. When CRMO is not outgrown it shows up
as SAPHO, or acne of the skin above the affected bone. From
1991-2002, 30 kids were diagnosed. These children had
a range of 2-17 years. There were 21 girls and 9 boys.
Proving that known fact that CRMO is more common among
girls.

At the school library, I read a section in a book
about Osteomyelitis. I learned that this disease was
known since ancient times. The author of the book also
hinted that a cause might be respiratory infections, as mentioned
before. Other causes might be an open wound that exposes bone or
shatters bone. (i.e. bullet wound). Studies show that
more people were affected in places where wound care
is inadequate. This article said that to diagnose this
disease blood tests, x-rays, and biopsies are needed.
Treatments for Osteomyelitis (not CRMO) include
antibiotics, or in some cases, surgical draining.
In 2002 when i was diagnosed with Osetomyelitis,
I had to have surgery to remove the affected bone.
To prevent this disease one must seek prompt
treatment of respiratory infections, such as Strep.

When I was in Minnesota for winter break I tried to
find a book. Instead I found an article and talked to
a regents professor. The professor told me that there
were many other names for CRMO. Such as Crohn’s
disease hyperostosis and more. In 1990 they settled on
CRMO. He told me that before MRI’s, lesions showed up
on X-rays.

He also told me about treating one of his
patients affected by CRMO with non steroidal drugs.
(NSAID’s) This is a very common treatment for CRMO
patients

In the article that I read in Minnesota, I learned
that, CRMO is the most severe form of Chronic
non bacterial Osteomyelitis. It predominantly affects
the metaphyges of the long bone but lesions occur at
any site of the skeleton. Lesions can occur in organs
such as, eyes, tracks and lungs. The article that
information about a 10 year old girl who was
diagnosed. Investigations to prove CRMO are needed,
such as physical examinations and MRI’s. To manage
this disease a patient is put on NSAID’s for three
months, if this does not work usually Sualfasalazine
and Prendizone are used. These are sterodial drugs
used to remove pain. It also contained information
about a girl who was nine years old. She was affected
in her spine. Another test used to investigate was the
sedimentation rate. A usual rate is 10, at one point
mine was 80. This test just measures how high the
energy level is in your body. With this information
you will know if your white blood cells are busy at work if the
energy level is high. Thus hinting that there is an invader
that is being attacked. Or possibly that they are attacking your
bones. Other causes are trauma or recent injury.

Using the Cierney-Madar system Osteomyelitis is
categorized by acute, pain occurs two weeks after
onset. Onset means injury or trauma. Subacute, one to
several weeks after onset. And chronic, few months
after onset. Divided by Waldrogel classification types
are hematogenous, contiguous and chronic. This disease
can be described as “an anti inflammatory disorder”.

This disease was known as a clinical entity for 3
decades before it was recognized as CRMO. It shocked
me to hear from Dr. Quie that, “The probability of
getting CRMO is about one to a million.” Relapses are
frequent even under therapy. This disease may later
become SAPHO (acne) or Arthritis (inflammation of the
joints).

I used to think of this disease as the enemy, but now that
I have learned more about it I have come to think of it as
something that will follow me around throughout my life,
just another thing I must live with. I read somewhere,
“We can’t stop what’s done to us, we can only survive it.”
This quote describes how I feel.

Dedication

I would like to dedicate this blog and my entire I-search adventure to my Infectious Disease Doctor, Charolet Hsieh. She is a doctor that I enjoy to see and she has helped me through a lot. My family and I have been very close with her. She understands me as a teenager, and a patient. She has taught me a lot and the least I can do is to thank her is to dedicate my work and research to her.

About the Blogger

My name is Nina Magnuson. I was diagnosed with Oseteomyelitis in 2002. I had a surgery to remove it and got home the day before Christmas. I was on a medicine that was injected into my blood stream through a pick line. A tube that is inserted into a vein and leads to the heart where it pumps the injected substance throughout the body. This disease has come back two other times now and I continue to battle it. Things are looking up for me now, and I made this blog to help support others affected. I have a great family and many friends that have supported me. A big help has been my father and mother who understand me. I would like to inform others about this disease because I feel that it would be beneficial to the people affected to feel welcome. To read more about my encounter with chronic recurrent multifocal osteomyelitis,(CRMO) please read the section titled, my story. But this disease does not make my life, i play soccer, love my family, and am now a sophmore in highschool.

My story

In 3rd grade i had my first encounter with this disease. I was sent to see a doctor when the teachers began to notice my limping. The doctors could not be sure what it was without taking out some bone to test on first. The possibilities were Oseteomyelitis, bone cancer, or arthritis. After surgery, it became apparent that I had Osteomyelitis. I had a pickline with was a tube that is put into your blood stream that leads to your heart. At the end of the tube there is a place to inject a needle that pushes in medicine that follows the tube to your heart and is then pumped through out your body. When I was just coming out of the 6 weeks of treatment I wrote in my diary.

First when i began to limp was on November 17, 2002. Right after my soccer tournament. I played one game but I didn't feel a thing. I think I had hurt my leg jumping on my bed. Than i began to limp and the week after Thanksgiving I went to my doctor, she tested my leg and said maybe it is just a pulled ligamint. So she sent us to get X-Rays, then we took a Cat Scan and I had bad stuff.
I went to the hospital for an operation. All I can remember is a tube on ur mouth, two breathes abd you are asleep. It was astio myolightous. (At the time i was finishing 3rd grade an did not know how to spell Osteomylitis) I had to have a walker but then i changed to crutches. I had to take some kind of medicine.
Than six weeks later through a pick line. When they put it in it hurt. I got off my crutches and was fine.


This is mostly the spelling that I used. I am glad that I wrote it down. Obviously I had no idea that it was so much more than just, and I quote myself,"Bad stuff in me." Also I nor the doctors knew that one day it would return.
I spent the next couple years of my life growing up. But than in sixth grade the time I had been running form finally caught up to me. This time more educated about the disease, I began treatment again. My infectious disease doctor, knew that to figure out what it is you must treat with some medicines and see how it reacts and only after many trials conclude that it is CRMO. This time the doctors chose to treat it with antibiotics. These medicines are used only to kill infectious germs, not inflammatory like CRMO. I was on a medicine in the family called Clyindomicine for 4 months. Sometimes it worked and sometimes it didn't, so it was hard to tell if my body responded to it. But after a while the symptoms stopped.
Late in 2007, this disease reoccurred. I was put on Indomethazine for at least 4 years to kill the disease. Along with many for pain and inflammation. So far they are working but off and on the pain comes back. Because now that it was been treated in all the other ways, I was diagnosed with Chronic Recurrent Multifocal Osteomyelitis. I hope that it never reoccurs again and I doubt that it will because now we are sure what it is and how to treat it.