Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 Tom I by no means meant to imply she wouldn't be welcome if she had PF. I just saw nothing in your post to indicate she did. Obviously she'd be more than welcome. Still addressing the underlying condition seems to be of the utmost medical concern at this point. The one thing we also have to be careful about when talking to those with PF caused by another condition is making sure they don't get it confused with IPF and the prognosis that accompanies IPF. There may very well be treatments for the causative condition. Likewise, controlling the causative or primary condition may well slow or even stop the progression of the PF. This is not dissimilar to someone with hypersensitivity where the agent to which they are sensitive is removed. Although at first it sounds like a huge negative for a PF patient to find out they have a connective tissue disease as well, it can often be a blessing if its discovered to be an underlying cause. It then gives the doctors a condition to attack and treat. Thats one reason my rheumatologist has been so obsessive. He continues to hope he can find an underlying connective tissue disease that he can treat and that would, in turn, perhaps slow the PF progression. It's still not a cure, but it is treatment. > > > > > > > > > From: drwooly2006 uncle_fuzzy@ > > > Subject: Need to contact someone with knowledge of > > MAS > > > To: Breathe-Support@ yahoogroups. com > > > Date: Saturday, October 17, 2009, 1:07 AM > > > > > > > > > > > > > > > > > > > > > Hi All, > > > > > > I also belong to a Still's support group and we recently had a new > > member join who has a 22 year old neice with Still's disease and is in > > Swedish Hospital in Seattle. She is in the ICU on a vent. I know that > > MAS is not usual but does occur related to (usually) Juvenile Stills > > disease and frequently results in PF if one is lucky enough to survive > > the acute outbreak. > > > > > > A) I plan on giving her the information to connect with us on this > > board. > > > > > > Does anyone out there know more than I do about MAS? (Bruce maybe?) > > > > > > C) Is anyone familiar with the Pulmonary capabilities of Swedish > > Hospital in Seattle. The family is from Idaho and she was choppered into > > Seattle. > > > > > > Thanks for any help and feel free to email me direct. > > > > > > Tom from PA AOSD 2003, Asthma 2005, NSIP 2008 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 Bruce, No worry, I did not take your response in the negative. At this point in this young woman's life, the big thing will be to get her over this hurdle. If she does end up with PF, I am sure your information (as I myself have found) will become most useful. One of the things I was looking for was an idea of the abilities found at Swedish Hospital in Seattle, figuring if they had a cracker jack team of pulmodudes, along with Rheumys, who dealt with PF they would also (from what I have read) be pretty adept at dealing with the critical nature of this phase of MAS she is in. I agree that the differential between IPF and PF is very important. At least with PF related to an AI the goal is to treat the underlying connective tissue disease where IPF is still such an unknown and treatments (and outcomes as evidenced by you and others) are still a lot of attempts and missteps. 2007-08 was a real crappy time for me becuase my AOSD was out of control and led to my PF. So, yes, although I am not super grateful to have AOSD and PF, I do consider myself lucky that there is standard treatments in place for me. Tom from PA > > > > > > > > > > > > From: drwooly2006 uncle_fuzzy@ > > > > Subject: Need to contact someone with knowledge > of > > > MAS > > > > To: Breathe-Support@ yahoogroups. com > > > > Date: Saturday, October 17, 2009, 1:07 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi All, > > > > > > > > I also belong to a Still's support group and we recently had a new > > > member join who has a 22 year old neice with Still's disease and is > in > > > Swedish Hospital in Seattle. She is in the ICU on a vent. I know > that > > > MAS is not usual but does occur related to (usually) Juvenile Stills > > > disease and frequently results in PF if one is lucky enough to > survive > > > the acute outbreak. > > > > > > > > A) I plan on giving her the information to connect with us on this > > > board. > > > > > > > > Does anyone out there know more than I do about MAS? (Bruce > maybe?) > > > > > > > > C) Is anyone familiar with the Pulmonary capabilities of Swedish > > > Hospital in Seattle. The family is from Idaho and she was choppered > into > > > Seattle. > > > > > > > > Thanks for any help and feel free to email me direct. > > > > > > > > Tom from PA AOSD 2003, Asthma 2005, NSIP 2008 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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