Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 I wasn't sure if anyone here is dealing with an MBL (mannan binding lectin) deficiency. All of our kids have a severe deficiency and we just learned that they are starting phase 2 trials of recombinant MBL replacement. Our immuno is hoping that this will eventually be a treatment option for our kids. Here is more info if anyone is interested: http://www.natimmune.com/frame.cfm?sprog=2 & grp=4 & menu=3 Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2010 Report Share Posted June 16, 2010 You can look up MBL deficiency and see that it is a genetic disorder. It could be an explanation for your daughters ongoing infections. There are some studies going on at NIH. BARBIE ________________________________ From: beyeafamily <debeyea@...> Sent: Wed, June 16, 2010 7:17:43 AM Subject: MBL Deficiency Just wondering if anyone else is dealing with this and if you could share some insight about it? My daughter, recurrent sinus and severe infections despite being on IG therapy, was tested for it and the numbers came back 'severely deficient'. How is it treated? Is it a part of CVID? What other things could it mean? Is it usually a genetic thing? Should the other kids who also have immune problems be tested? thanks! a, mom to 4 wonderful girls, dealing with Mito, Eos, etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2010 Report Share Posted June 16, 2010 You can look up MBL deficiency and see that it is a genetic disorder. It could be an explanation for your daughters ongoing infections. There are some studies going on at NIH. BARBIE ________________________________ From: beyeafamily <debeyea@...> Sent: Wed, June 16, 2010 7:17:43 AM Subject: MBL Deficiency Just wondering if anyone else is dealing with this and if you could share some insight about it? My daughter, recurrent sinus and severe infections despite being on IG therapy, was tested for it and the numbers came back 'severely deficient'. How is it treated? Is it a part of CVID? What other things could it mean? Is it usually a genetic thing? Should the other kids who also have immune problems be tested? thanks! a, mom to 4 wonderful girls, dealing with Mito, Eos, etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 So is an MBL deficiency the same as complement deficiency ? Braden's C3 and C4 are low, as is more typical I think in PID....mine are high. From what I can find so far, the elevated C3 and C4 are related to autoimmune diagnoses- does that sound right to you ? Lori lucky mom blessed with triplets > > > > Just wondering if anyone else is dealing with this and if you could share some insight about it? My daughter, recurrent sinus and severe infections despite being on IG therapy, was tested for it and the numbers came back 'severely deficient'. How is it treated? Is it a part of CVID? What other things could it mean? Is it usually a genetic thing? Should the other kids who also have immune problems be tested? > > > > thanks! > > a, mom to 4 wonderful girls, dealing with Mito, Eos, etc > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 So is an MBL deficiency the same as complement deficiency ? Braden's C3 and C4 are low, as is more typical I think in PID....mine are high. From what I can find so far, the elevated C3 and C4 are related to autoimmune diagnoses- does that sound right to you ? Lori lucky mom blessed with triplets > > > > Just wondering if anyone else is dealing with this and if you could share some insight about it? My daughter, recurrent sinus and severe infections despite being on IG therapy, was tested for it and the numbers came back 'severely deficient'. How is it treated? Is it a part of CVID? What other things could it mean? Is it usually a genetic thing? Should the other kids who also have immune problems be tested? > > > > thanks! > > a, mom to 4 wonderful girls, dealing with Mito, Eos, etc > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 Yep, MBL is part of the complement system. I have normal levels, but I still deal with auto-immune stuff. Conner has low levels and he has auto-immune issues. Basically, we're a mess! > > > > > > Just wondering if anyone else is dealing with this and if you could share some insight about it? My daughter, recurrent sinus and severe infections despite being on IG therapy, was tested for it and the numbers came back 'severely deficient'. How is it treated? Is it a part of CVID? What other things could it mean? Is it usually a genetic thing? Should the other kids who also have immune problems be tested? > > > > > > thanks! > > > a, mom to 4 wonderful girls, dealing with Mito, Eos, etc > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 Yep, MBL is part of the complement system. I have normal levels, but I still deal with auto-immune stuff. Conner has low levels and he has auto-immune issues. Basically, we're a mess! > > > > > > Just wondering if anyone else is dealing with this and if you could share some insight about it? My daughter, recurrent sinus and severe infections despite being on IG therapy, was tested for it and the numbers came back 'severely deficient'. How is it treated? Is it a part of CVID? What other things could it mean? Is it usually a genetic thing? Should the other kids who also have immune problems be tested? > > > > > > thanks! > > > a, mom to 4 wonderful girls, dealing with Mito, Eos, etc > > > > > > Quote Link to comment Share on other sites More sharing options...
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