Search results

I've heard so many adult cystics saying (basically) "nothing about us without us" . This phrase come out of the disability rights movement. (It's also the title of a famous excellent book by James I. Charlton ( <a target=_blank class=ftalternatingbarlinklarge...

It's "official". The FDA is calling for new black box warnings on these (and related) meds <a target=_blank class=ftalternatingbarlinklarge href="http://news.yahoo.com/s/ap/20080708/ap_on_he_me/antibiotics_warning">http://news.yahoo.com/s/ap/200...me/antibiotics_warning</a>

What with knowing that Pepe is fighting for her life this song has been running through my mind the past few days (as it did during when Rip was having particularly bad days and during my stepniece's wait for her tx) Alexi Murdoch "Breathe" <a target=_blank class=ftalternatingbarlinklarge...

Interesting site I just was told about <a target=_blank class=ftalternatingbarlinklarge href="http://www.survivorshipatoz.org/">http://www.survivorshipatoz.org/</a> "Survivorship A-Z" "Our Unique Mission: To provide the practical information you need to thrive in the "new normal" that exists...

<a target=_blank class=ftalternatingbarlinklarge href="http://news.yahoo.com/s/hsn/20080519/hl_hsn/depressionptsdcommonamonglungtransplantpatientcaregivers;_ylt=AoeQ5oFNpe7y3.Kgh9CEMMXVJRIF ">http://news.yahoo.com/s/hsn/20....Kgh9CEMMXVJRIF </a> read it my thought was "no sh##". they needed a...

I don't know about you, but for me - for my late husband's family - CF (lung/pancreatic disease) is very much a family disease. He has/had 3 sisters and a brother. He died from bronchiectaisis complicated by MRSA and PA (tho' the death certificate lists liver failture first and sepsis second)...

Just read this one <a target=_blank class=ftalternatingbarlinklarge href="http://news.yahoo.com/s/ap/200...8MXg1b4ekKs0NUE ">"><a target=_blank class=ftalternatingbarlinklarge href="http://news.yahoo.com/s/ap/20080218/ap_on_he_me/healthbeat_hospital_errors;_ylt=AhL6V2ifJS8WH8MXg1b4ekKs0NUE <br...

Paul and Gina are both having a hard time of it right now, but still sharing their journeys with us through their blogs. "<a target=_blank class=ftalternatingbarlinklarge href="http://friendsofpepe.blogspot.com/">Pepe</a> ">http://friendsofpepe.blogspot.com/">Pepe</a> "<a target=_blank...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.insidebayarea.com/ci_7901889?source=rss">http://www.insidebayarea.com/ci_7901889?source=rss</a> I found the article when I was searching the news for "marfan" (one of my late husband's illnesses)..... The paras I found most...

see the post by beckiboyle21 at <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=26412&highlight_key=y">http://forums.cysticfibrosis.c...=26412&highlight_key=y</a> on the Partners forum

lots of postss over the years about whether to ask for make-a-wish and when. Found this article <a target=_blank class=ftalternatingbarlinklarge...

according to the Pulmonary Paper <a target=_blank class=ftalternatingbarlinklarge href="http://pulmonarypaper.org/">http://pulmonarypaper.org/</a>

On a caregiver's board that I'm on we brainstormed once to come up with ways we had simplified things to find more time. Thought I would share. I'd lovbe to hear what other things you all do. <b>General</b> Lower your standards Join flylady (at <a target=_blank class=ftalternatingbarlinklarge...

If you live near San Francisco and some of your kids have CF and others don't there is a wonderful center for the non-CF kids called the Sibling Center ( see <a target=_blank class=ftalternatingbarlinklarge...

called "A Little Love Story" see <a target=_blank class=ftalternatingbarlinklarge href="http://www.amazon.com/gp/product/product-description/1400032555/ref=dp_proddesc_0/104-6737304-7892768?ie=UTF8&n=283155&s=books">http://www.amazon.com/gp/produ...=UTF8&n=283155&s=books</a> .

So having read my way through the thread about all the really irritating things that people say when you tell them you or your kids have CF, I'm wondering.... What <i>would</i> you like people to say? What could they say that wouldn't irritate the h@@l out of you? (Not being a wise a@@ here -...

I'm sure lots of you know this site ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.thebreathingroom.org/">http://www.thebreathingroom.org/</a> ), but since I couldn't find a link to it from this site thought I'd post it. I've used the photos and stores in the "lookin Glass"...