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Inneke VdB
Sep 1, 2009, 8:48:09 AM9/1/09
to Engelmann's Syndrome
Hi,
My name is Inneke, I'm 19 years old and I was diagnosed at the age of
15.
I live near Brussels in Belgium.
All my life I have walked with the typical waddling gait. But the
pains have only begun when I was 14 years old.
First it was only in the evening, when I wanted to fall asleep. Later
I also had pain when I had to get up from a chair, went up or down
staircases, jumped, runned,...
I didn't walk normal, so I went to see docters with my mom since I was
a little girl.
But none could find out what was wrong with me.
At 14 when the pain got worse, my mom insisted on a clinical research.
In my blood they found that my alkaline phosphatase had increased to
abnormal levels. (It was over 600)
So they adviced to do an Isotope bone scan. They lay all the pieces of
the puzzel together and diagnosed Camurati-Engelmann Syndrome.
On X-rays they saw that I have anomalies in my long bones and in my
skull.
Looking for treatment, I went to a rheumatologist. He gave me 20 mg of
prednisone a day together with two pills in piroxicam (an inflammatory
drug)
The chronic pain stopped, I gained some weight (which was good), and I
slept much better.
Due to the side-effects I slowly decreased the drugs, and so the pain
got worse again.
Now I don't take any pills. Except when I know that I have to stand up
for a long time or walk far, then I take one piroxicam. ( I have less
pain and I'm in a better shape.)
I think the worst thing about my disease is the pain. You don't want
to be in pain all the time, so you stay in your seat. And sit. All day
long.
And then people think you're a lazy child, when actually you want to
explore the world.
But I'm optimistic, I'm studying Biomedical Sciences so I can learn
more about this rare disease.
And maybe find some better alternatives than prednisone and
inflammatory drugs.
On the internet I read about an operation were they "drill holes in
your bones to the bonemarrow."
Does anyone have experience with this or heard from it?
I inherited the disease from my mother. But she has no pain and didn't
know she had the disease. They could only see it on X-rays.
My sister has also anomalies on X-rays, but she also has no pain or
any other signs.
That's my brief history
Take care
Inneke :)
My name is Inneke, I'm 19 years old and I was diagnosed at the age of
15.
I live near Brussels in Belgium.
All my life I have walked with the typical waddling gait. But the
pains have only begun when I was 14 years old.
First it was only in the evening, when I wanted to fall asleep. Later
I also had pain when I had to get up from a chair, went up or down
staircases, jumped, runned,...
I didn't walk normal, so I went to see docters with my mom since I was
a little girl.
But none could find out what was wrong with me.
At 14 when the pain got worse, my mom insisted on a clinical research.
In my blood they found that my alkaline phosphatase had increased to
abnormal levels. (It was over 600)
So they adviced to do an Isotope bone scan. They lay all the pieces of
the puzzel together and diagnosed Camurati-Engelmann Syndrome.
On X-rays they saw that I have anomalies in my long bones and in my
skull.
Looking for treatment, I went to a rheumatologist. He gave me 20 mg of
prednisone a day together with two pills in piroxicam (an inflammatory
drug)
The chronic pain stopped, I gained some weight (which was good), and I
slept much better.
Due to the side-effects I slowly decreased the drugs, and so the pain
got worse again.
Now I don't take any pills. Except when I know that I have to stand up
for a long time or walk far, then I take one piroxicam. ( I have less
pain and I'm in a better shape.)
I think the worst thing about my disease is the pain. You don't want
to be in pain all the time, so you stay in your seat. And sit. All day
long.
And then people think you're a lazy child, when actually you want to
explore the world.
But I'm optimistic, I'm studying Biomedical Sciences so I can learn
more about this rare disease.
And maybe find some better alternatives than prednisone and
inflammatory drugs.
On the internet I read about an operation were they "drill holes in
your bones to the bonemarrow."
Does anyone have experience with this or heard from it?
I inherited the disease from my mother. But she has no pain and didn't
know she had the disease. They could only see it on X-rays.
My sister has also anomalies on X-rays, but she also has no pain or
any other signs.
That's my brief history
Take care
Inneke :)
Ingrid
Sep 3, 2009, 5:41:58 PM9/3/09
to Engelmann's Syndrome
Hi Brigitte
First of all congratulations on your studies,and special for your
motivation. I share with you many of the things we've been, I am also
being treated with prednisone.
When we are passive because our bodies can not do anything else, the
imagination is what leads us to explore new places.
Welcome and sorry about my English
Oh my name is Ingrid and I'm from chile sudamerica
Take care
Hugs
First of all congratulations on your studies,and special for your
motivation. I share with you many of the things we've been, I am also
being treated with prednisone.
When we are passive because our bodies can not do anything else, the
imagination is what leads us to explore new places.
Welcome and sorry about my English
Oh my name is Ingrid and I'm from chile sudamerica
Take care
Hugs
Christina
Sep 4, 2009, 11:36:53 AM9/4/09
to Engelmann's Syndrome
Hello Inneke
Welcome to our group, I am pleased that you found us! :o)
You are very lucky not to have suffered pain all your life, but I am
sure that is of little consolation now that it has become a problem
for you!
I think ithat it is wonderful that you are studying medicine and I
ofetn wish I had done the same when I was at school and college as I
am sure ot would be a great help in understanding CED better.
We can all agree with you that the worst thing about this condition is
the terrible pain it causes and unfortunately it seems to be very
difficult to find any medication that can control the pain completely,
especially in the long term!
I can relate to the fact that you are also tired from pain and often
have to sit down to rest when I am sure you would like nothing better
than to be healthy and active. I know that is how it is for me!
At the moment I am suffering a very bad flare up with my CED and its
the worst pain I can ever recall having. It hurts in my legs and arms
and skull and its incredibly difficult to rest or sleep due to the
pain and discomfort. It is really getting me down at the moment,
whereas I am normally a very happy and upbeat person!
I hope that as the numbers of sufferers in our CED groupd continue to
grow that we can one day find someone willing to research CED further
so that we can get some help for us all. In the meantime, please know
that you are welcomed into our group and we are here to help and
support you in whichever way we can! :o)
You may also like to check out our other groups at:
www.tribe.net/engelmanns
www.facebook.com (search for "Camurati Engelmann's Disease
(CED)" and you will find us!)
Bye for now, and look forward to hearing from you again!
Christina. xx
Welcome to our group, I am pleased that you found us! :o)
You are very lucky not to have suffered pain all your life, but I am
sure that is of little consolation now that it has become a problem
for you!
I think ithat it is wonderful that you are studying medicine and I
ofetn wish I had done the same when I was at school and college as I
am sure ot would be a great help in understanding CED better.
We can all agree with you that the worst thing about this condition is
the terrible pain it causes and unfortunately it seems to be very
difficult to find any medication that can control the pain completely,
especially in the long term!
I can relate to the fact that you are also tired from pain and often
have to sit down to rest when I am sure you would like nothing better
than to be healthy and active. I know that is how it is for me!
At the moment I am suffering a very bad flare up with my CED and its
the worst pain I can ever recall having. It hurts in my legs and arms
and skull and its incredibly difficult to rest or sleep due to the
pain and discomfort. It is really getting me down at the moment,
whereas I am normally a very happy and upbeat person!
I hope that as the numbers of sufferers in our CED groupd continue to
grow that we can one day find someone willing to research CED further
so that we can get some help for us all. In the meantime, please know
that you are welcomed into our group and we are here to help and
support you in whichever way we can! :o)
You may also like to check out our other groups at:
www.tribe.net/engelmanns
www.facebook.com (search for "Camurati Engelmann's Disease
(CED)" and you will find us!)
Bye for now, and look forward to hearing from you again!
Christina. xx
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