Hello, I'm new

[gemtwinks]

I had all but forgotten that I have CED until a couple of weeks ago. I
have two cousins severely affected, but many of us with just a few
problems consistent with CED (there are over thirty first cousins). I
found out when I was 16 that I have the bone deformities (my older
cousin was correctly diagnosed by now, so they figured mine out
relativley soon - about a year). I've had only moderate pain and very
little weakness until recently. One leg has been getting progressively
weaker and I also have bursitis in that hip as a result. The pain in
my low back, leg and hip is sometimes quite bad. I would love to go
back to a gym teacher who failed me for refusing to run in middle
school (that did hurt too much), but noone knew there was anything
really wrong with me then. My husband doesn't really get that I hurt
all the time. I can't really do any yard work anymore without major
repercussions the next day. Still I'm very fortunate that I can still
work and do most of what I want when I want.

One cousin has been in a wheelchair since a broken leg as a young
adult, that never healed properly. Another has had many serious
problems his whole life. Others have headaches, one "outgrew" it, and
most of the family doesn't seem to want to accept that half of us may
have it.

I'd like to know the extent of my deformities at this point (I'm 42
now). Mainly so I can have an idea of what might be in store. As a
yound adult I had deformities on both legs, one arm and thickening in
my jaw. The skull thickening is very frightening and I have started
getting headaches in the last year or so. I can't walk stairs very
well anymore, I never used to take elevators, hate them. Does anyone
know of a knowledgable doctor in the midwest? I live in Minnesota, I'd
be willing to travel to Cedar Sinai, but if I can avoid that expense
it would be great.

My docs took an x-ray of my hips for the bursitis and found the
sclerotic areas on my left leg. My right leg is the weak/painful one.
I e-mailed them a bit about CED and they put it in my chart
immediately. First time ever anyone has taken it seriously. So many
time I have been told it's mental weakness or all in my head. It's
nice to have someone believe me. Now I just need to convince them to
learn more about it and survey the rest of me.

You all have my support. I've seen first hand how bad it can be, and
how hard it is to make the medical community take notice. When my
older cousin didn't walk until late, they told my aunt she was
coddling him. It was many years before he got a proper diagnosis.

[Christina]

Hi there, I am so glad you found our site and would like to welcome
you to our small CED community!

I understand fully what you have gone through as it took a long time
for any of the doctors that my mother took me to when i was younger to
actually believe that there was anything wrong with me! I was finally
diagnosed with CED at the age of 4 and I am now 27.
I have had to take painkilling medication all my life in order to help
control the pain levels, although they often dont work that well and
i still have to endure really bad pain levels.

I am living in the UK and so I am not able to give you much advice as
to which doctors/clinics in the US you should see, My advice would be
to ask your GP to refer you to a bone specialist at your local
hospital and ask them to perform some x-rays and/or an Isotope Bone
Scan. These will show clearly the effects of the CED and the scan will
be able to show you the areas of your body which are worst affected by
the CED.
I know that a few of our members have been seen by doctors at Cedar
Sinai, so if any of you are reading this I would ask that you offer
any help and advice that you can?? (please!) Maybe try emailing or
messaging the US sufferers yourself as I am sure they will be of more
help to you in finding a doctor than I can be!

I hope you know that CED is a very real and painful condition that
affects us all in different ways! Its just that because there are so
few of us in the world who have the condition, the medical
professionals dont seem to want to aknowledge that we exist! That is
the main reason why I set up these online groups.. to help find more
people who have CED and also so that we have somewhere to turn when we
need support that the doctors cant offer!
I would also ask that you try to get the other memers of your family
who suffer with CED to join this group too?

I hope to hear more fom you soon.

Christina, x