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Replying to Topic: pcd
Created On 1/6/05 2:03 PM by pcd


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pcd
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1/6/05 2:03 PM
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i have a child diagnosed with primary ciliary dyskenisia - just wondering if anyone has this or knows about it?
 
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Voos_Noch?
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1/10/05 12:46 PM
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The university of North Carolina has a research group dedicated to PCD with a focus on pediatric patients, they are trying to put together a patien database and support group. you might want to try them at
http://www.med.unc.edu/wrkunits/3ctrpgm/cystfib/PCD.htm

or try
http://pcdfoundation.org/
 
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pcd
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1/10/05 1:28 PM
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thank you for your reply. i will try that.
 
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bashert
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2/9/05 12:31 PM
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i am sorry i don't know any info but i'd like to know if anyone has any info onrestrictive airway disease....i have been in the hospital many times and i am looking for help in getting info...thanks!!!!
 
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happyone
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2/17/05 11:37 PM
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try contacting childlifesociety.org . The treatment is the same or very similar to cystic fibrosis. You would find support by talking to CF parents. I think the organazation also helps familiies dealing with PCD. www.childlifesociety.org
 
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aishel
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7/5/05 3:14 PM
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Quote

Originally posted by: bashert
i am sorry i don't know any info but i'd like to know if anyone has any info onrestrictive airway disease....i have been in the hospital many times and i am looking for help in getting info...thanks!!!!


Have you tried using a C-PAP machine?
 
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bashert
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7/7/05 11:15 AM
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i know a little about restrictive airway disease.....i happen to have something like that.. i've been in the hospital a few times,,, i dohn't kniow if you also retain arbondioxide i do and i use a speial machine alled a bipap it i is different than a cpap... what are your questions????? i am going im"yirtzah Hashem to Denver because they have special hospital for lungs allerigies immune systems problems it is comparable to the mayo clinic but dpecifically for those things... i don't own a computer but hopefully i will get back on soon....
 
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pcd
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2/26/06 11:48 AM
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has anyone heard of a minhag where you add a hebrew name to someones existing name for refua and does this apply to chronic illnesses such as primary ciliary dykenisia or cystic fibrosis?
 
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refua
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3/7/06 9:49 PM
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that is an excellent question, i am not a rabbi but I have heard that too.
 
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