Cleidocranial Dysplasia (Dysostosis)

Anyone here with Cleidocranial Dysplasia (Dysostosis) CCD. It is a very rare condition affecting one out a million people world wide. One of the manifestations is sleep apnea and other upper airway obstructions.

Gary

garyland wrote:Anyone here with Cleidocranial Dysplasia (Dysostosis) CCD. It is a very rare condition affecting one out a million people world wide. One of the manifestations is sleep apnea and other upper airway obstructions.

Gary

Gary, because that condition is so rare I worry no one will answer "yes" to your query. Yet, as you know there are plenty of us here dealing with odd and fairly rare issues that either result in sleep apnea or complicate the treatment of sleep apnea.

But you have been a member for almost five years, so you've probably noted that members rally around one another and try to help each other find therapy options that work for each of us as individuals. So, hopefully you recognize that even if no one else shares exactly the same issues, we will do what we can to help you obtain the best xPAP therapy to meet YOUR needs.

And since you are a fairly active member, you have seen others offer suggestions of what works for them. Hoping that in the mix of suggestions you will find something new that might work for you.

For those who are interested, the following link seems to provide a "tiny tip of the iceberg explanation of "Cleidocranial Dysplasia (Dysostosis) CCD":

http://ghr.nlm.nih.gov/condition=cleidocranialdysplasia

Whether this is for you or for someone else, simply help guide us toward what works for you and what does not. Though I imagine you get pretty sick of having to do that, all we can do is offer our help based on what worked for us and from those nuggets of our experience you can search for workarounds that meet your needs.

Each of us have an individual journey we take through life. Though your journey is far more challenging than many of us face, along this particular pathway we call xPAP therapy you will find many kindred spirits slogging their way toward that wonderful objective: peaceful sleep. Hopefully as fellow travellers we might be able to help support and encourage you along your journey!

And for all my fellow sojourners, who feel their path is far too lonely ... that no one understands ... I offer a familiar poem and remind each of you that though alone, our own individual journeys shape us. Though others might think to help and offer pity. Though some might actually help and offer empathy. Though some might only highlight their easier path. Though I might dispair of any ongoing path. Though all of that, I reflect on my own Journey and rejoice in both the pain and the blessings of my path. Both craft the "me" that stands before others and God. Let that "me" likewise be a blessing to others. And through that blessing others might see the One who set this Journey.

Robert Frost wrote:The Road Not Taken

TWO roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

http://en.wikipedia.org/wiki/The_Road_Not_Taken_(poem)

JohnBFisher wrote: Each of us have an individual journey we take through life. Though your journey is far more challenging than many of us face, along this particular pathway we call xPAP therapy you will find many kindred spirits slogging their way toward that wonderful objective: peaceful sleep. Hopefully as fellow travellers we might be able to help support and encourage you along your journey!

And for all my fellow sojourners, who feel their path is far too lonely ... that no one understands ... I offer a familiar poem and remind each of you that though alone, our own individual journeys shape us. Though others might think to help and offer pity. Though some might actually help and offer empathy. Though some might only highlight their easier path. Though I might dispair of any ongoing path. Though all of that, I reflect on my own Journey and rejoice in both the pain and the blessings of my path. Both craft the "me" that stands before others and God. Let that "me" likewise be a blessing to others. And through that blessing others might see the One who set this Journey.

John, so beautifully said. Thank you. You bring such loving kindness to this forum, in addition to your wisdom and humor. The Road Not Taken is one of my favorites, too.

i am searching for information regarding cleidocranial dysplasia and sleep apnea. I can see that these posts are old, but i am curious if you have any information links that will help me with the apnea piece. My granddaughter is 2 1/2 and is now using a cpap machine.

thank you

bbfoose wrote:i am searching for information regarding cleidocranial dysplasia and sleep apnea. I can see that these posts are old, but i am curious if you have any information links that will help me with the apnea piece. My granddaughter is 2 1/2 and is now using a cpap machine.

thank you

As I noted above, I doubt there would be many / any folks who will reply to this "as is". Very, very few people have Cleidocranial Dysplasia (CCD). Thus, it is quite unlikely you will get tailored responses to your query.

However, there are other resources on the web that might be able to help. Google's Scholar search can be very helpful for this type of research. You an use the following query URL to search for relevant articles:

http://scholar.google.com/scholar?q=cle ... leep+apnea

There are several articles that might help.

Additionally, if you research posts on this forum (and read) you will find that many general questions you might have about sleep apnea are answered. Though this is a symptom your granddaughter has as a result of the CCD, I suspect the management of it would be the same as if she had normal sleep apnea.

Hope that helps.

I was born with cleidocranial dysplasia 30 years ago. The doctors were not familiar with my condition whatsoever but I do know that I had a nasal surgery when I was about 6 months old. I have a feeling it was in connection to CCD.

http://scholar.google.com/scholar?q=Cle ... _sdt=0%2C5
pages of very technical information
Love scholar.google for all kinds of REAL info