Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 Tom, Obviously if she ends up with PF after this ordeal she is most welcome to join this forum, though the Stills forum would still probably be of most use and support to her. I would hope that if she joins Breathe Support we can provide the information and support about pulmonary fibrosis that she might not get in other places. I'm sorry that this very young woman is going through such a difficult time. I will keep her in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, October 17, 2009 1:57:35 PMSubject: Re: The other MAS Bruce,This is actually Macrophage Activation Syndrome. I should have clarified it since there are so many common acronysms that belong to totally different things. Macrophage Activation Syndrome is autoimmune, and usually secondary to another autoimmune disease, in that the macrophages (present in most organs) get "turned on" frequently attacking the lungs in a severe acure attack. In most case the patient must be vented and the end result for those recovering is scarring of the lungs and frequently on O2.Another Stills patient (20 years old) who recovered from Macrophage Activation Syndrome is on O2 just at night and had been in Pulm Rehab. Due to her Stills she also has developed AVN (Avascular Venous Necrosis) of her hip and is being evaluated for PAH.Tom> >> >> > 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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