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SCLS on U.S. TV Tomorrow

aporzeca Message
14 Mar 2010, 01:36 PM

Just a friendly reminder that, as part of our collective quest to raise awareness among doctors, nurses, scientists and others about our exceedingly rare illness, the TV program "Mystery Diagnosis" is featuring the saga of a member of this community, Walt Breidigan, from the vicinity of Pittsburgh, Pennsylvania. He and his supportive wife, whom I've had the pleasure to meet in person when they came to NIH, as well as his doctor and nurses and ambulance drivers, agreed to reenact their own personal nightmare -- not at all an easy thing to do. The episode is entitled "The Man Who Tripled in Size" and will premiere on Discovery Health Channel tomorrow, Monday, March 15, 2010, at 10PM EST. It is the first of two stories featured in an hour-long show. As you all know, many of us are permanently injured -- and who knows how many are killed -- by well-intentioned ER and ICU doctors who don't know what is wrong with us, but when they see that our blood pressure is very low, they give us liters and liters and liters of saline fluid in an understandable attempt to raise our BP and keep us from dying, but in so doing, they contribute to the amount of fluid that leaks out from our capillaries into our extremities and other body cavities -- thus our incredible swelling. (What they should do, of course, is to give us just a liter or two of fluid, along with medications like steroids, vasopressors, albumin and IVIG, and to monitor the pressure on our muscle compartments so that, if it gets too high, they can operate on us to relieve that pressure before it damages our muscles and nerves permanently.) If anyone misses out on the show or lives in other countries and wants to receive a DVD copy after it airs, feel free to email a request to Ms. Katie White at giving your name and postal address.
cmanmommy Message
14 Mar 2010, 01:55 PM

I have all of my son's Dr's, school staff and family and freinds all set to watch this or have their DVR's set.
rnolan Message
15 Mar 2010, 03:57 AM

I have ordered my copy through Katie and she was only too happy to send all the way down under to Christchurch New Zealand :-) Ruth
sclsusr1 Message
16 Mar 2010, 01:29 PM

It was so helpful to watch Walt's story on the show last night, since my daughter Rebecca was also diagnosed with the same condition in '07. Rebecca was just 2 years old then, so she could not communicate her symptoms or the pain she endured effectively. So it was really informative to see an adults perspective on this illness and made us realize the extent of the suffering this illness inflicts. We are grateful to Walt Breidigan and his family for sharing their experience with us. Best Regards, Manoj