Re: Need to contact someone with knowledge of MAS

[Guest guest]

Tom

I guess I miss something here but I don't see that you said she has PF

so I would think there would be much better forums for her to benefit.

While autoimmune diseases can often lead to PF, they more often do not.

There are many great forums specializing in autoimmune diseases. I do

not know of any specifically for MAS but she might search based on the

specific autoimmune diseases she has.

MAS is three or more co-existing autoimmune diseases. It is quite common

for people to have more than one autoimmune but MAS identifies three sub

types of autoimmune diseases commonly found together and provides

classification. The value of this identification is that typically one

will manifest itself first, generally a dermatological condition and it

may lead doctors then to look for the others. MAS is not a disease

itself but a syndrome.

Now you also ask about Swedish as a pulmonology hospital. I know nothing

really about Swedish but looking at their site, I find no indication

that pulmonology is one of their specialties. They are highly ranked as

a ER hospital and I'm sure that was important in the initial treatment.

However, again, it seems that the pulmonary issues are in all likelihood

secondary to the connective tissue/autoimmune diseases. So, that being

said, he might well need to look for the best rheumatology center she

can find. From Idaho, the nearest IPF Center of Excellence is the

University of Washington, but again I don't know about their ranking in

rheumatology. US News and World Report did rank U of Washington as the

22nd best in Rheumatology but thats only still a 3.7% ranking vs.

Hopkins which got 55.8%. Swedish was not ranked in either pulmonology or

rheumatology. The University of California San Francisco is also highly

ranked.

I do caution these are one sources means of ranking. However, I do think

they are worth looking at. My rheumatologist for some reason greatly

prefers Mayo, then Duke, then National Jewish over s Hopkins. No

Hospital in the Dallas area received high scores in either respiratory

or rheumatology, yet UTSW is an IPF Center of Excellence. However, my

rheumatologist strongly recommended against them for rheumatology.

I would think the immediate concern is emergency care and then I think I

would look toward a major teaching hospital as opposed to Swedish.

I hope this has been of some benefit.

>

> 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

>

[Guest guest]

Tom

sorry to hear about your friend's neice

what is MAS?

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Need to contact someone with knowledge of MASTo: Breathe-Support 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

[Guest guest]

Pink

MAS is Multiple Autoimmune Syndrome. Although not a medical sight and

therefore not an article with accuracy I can verify this is the best

article I found explaining it.

http://autoimmunedisease.suite101.com/article.cfm/multiple_autoimmune_sy\

ndrome

It's not a disease itself but a label given to combinations of

autoimmune diseases, consisting of at least three different ones.

I think in some ways there should be a PF Syndrome which would list the

other conditions found in such a high percentage of PF'ers. GERD is the

most obvious example but there are many others. Some like hypothyroidism

are tested for by most all doctors. Others many not be as regularly

tested.

MAS gives doctors a path to look for. For instance, Vitiligo, a

leukoderma causing loss of the skin pigment melanin, is followed by

other autoimmune diseases in the majority of cases.

>

>

> From: drwooly2006 uncle_fuzzy@...

> Subject: Need to contact someone with knowledge of

MAS

> To: Breathe-Support

> 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

>