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Old 02-03-2013, 11:59 PM   #1
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Join Date: Feb 2013
Location: Brisbane Queensland
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Joe3000 HB User
Bronchiolitis Obliterans

Hi, I am a 25 yr old post bmt patient and I have been diagnosed with Bronchiolitis Obliterans. I have been on failed steroid therapy since November last yr as my condition is gradually worsening. Because there is little information available for other treatments for this condition I ask anyone who has experienced this or knows any information on successful treatment options for this condition to share their knowledge. I would much appreciate it, Thank you.

 
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Old 02-11-2013, 05:01 AM   #2
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Join Date: Feb 2004
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Bronchiolitis Obliterans

Hello and welcome. I'm so sorry you've been diagnosed with this condition, which, from what I just read, seems rare. To find people on the boards here who either have it, or have something fairly close, I think your best bet is to perform an "Advanced Search". (Look for its link in the second of the blue bars just underneath the HB logo.) I'm thinking perhaps the "Lung & Respiatory Disorders" group may be of help...?

Also, have you checked for national or international organizations?

I also read that Bronchiolitis Obliterans can accompany certain autoimmunes, Rheumatoid Arthritis for one. Were you tested for RA or "close cousin" autoimmunes? There are active boards here for those conditions.

I'm sorry that I have no first-hand experience, but I hope someone on the various boards will have more detailed knowledge, and that this helps you locate such person(s)! Sending my best wishes, sincerely, Vee

 
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