Strollerderby : cystic fibrosis

Got a Sick Child? Go Online

JeanneSager — Tue, 02 Jun 2009 19:31:00 GMT

When I first read that more parents are going online after their kids get sick, I had thoughts of hundreds of graduates of Google University picking fights with the med. school grads trying to take care of their kids.

Good news: that's not what this story is about.

Not that parents can't find some good quality health information online. But there's enough fearmongering and misinformation online to make you never trust an MD again.

But a recent post over at the U.S. News and World Report parenting blog by Nancy Shute pointed to a phenomena that's been widely used, and yet widely overlooked: the online patient support group. Especially important for parents who don't want to leave their kids' hospital bedsides or have little time for nighttime support group meetings (and no money for a sitter when it's all going to the medical bills), online support groups offer not only a (virtual) shoulder to cry on but a go-to source for navigating the net full of all that fearmongering and misinformation.

They've read most of it and dissected it already. Plus, they've been where you are right now, and they can help you get to where they are. As Shute points out, they've also got a stake in finding the answers you want. Your doctors may be fantastic and incredibly intelligent, but they simply don't have the same kind of time to devote to your incessant quest for knowledge.

And online, we very often can find it - and in ways that we couldn't in our hometowns. Where there might be 100 kids with food allergies at your kid's elementary school, there are hundreds of thousands of parents dealing with them over at Kids With Food Allergies. Where only one in four thousand kids is born with cystic fibrosis across the entire U.S., hundreds of their moms and dads are blogging at CysticFibrosis.com.

Of course, you can't trust it all - read any blog (even Strollerderby), and there's a tendency for parents to post medical advice (here they leave it in comments), and for other parents to say, "oh, that's interesting, I didn't know that, I'll have to do that." Where people are quicker to discount the spoken word, a possible loon in an in-the-flesh support group, something about seeing the words written on a computer screen makes parents (people in general really) more trusting.

Would you prefer an in-the-flesh support group or are you all about online?

Image: OETSG

How You Can Keep Kids Breathing

JeanneSager — Fri, 29 May 2009 20:01:00 GMT

It's a disease that takes their breath away, but you can give it back.

Kids born with cystic fibrosis fight daily against the excessive mucus production that makes breathing a struggle. Their projected life expectancy is around thirty-seven years old.

But the Breathe 4 Tomorrow Foundation doesn't hit you over the head with their simple video that's starting to generate funds for the small Washington-based non-profit. All they ask for is $1.

In this economy, it's the kind of message that works. Pictures of brave kids undergoing treatments, a (relatively corny, but oh well) song about hope for tomorrow, and a simple request. Give them $1, and they'll help pay for the medicines for kids with cystic fibrosis.

Fundraising videos - especially featuring kids - can be cloying. But this one hit me just right (in the tear ducts). They're not presumptuous - just like the kids aren't presuming they'll live much past high school graduation or college. But you can change that.

Check out the video below. Did it move you? Then donate over at Breathe 4 Tomorrow.

Make an on-line slideshow at www.OneTrueMedia.com

Newborn Screening Programs Grow, Lives Are Saved

Kate Tuttle — Thu, 19 Feb 2009 19:26:00 GMT

Since 2000, programs that screen newborns for genetic disorders have been expanded in all 50 states, according to a report released today by the March of Dimes. Though only 24 states currently test for the 29 core genetic diseases identified by the American College of Medical Genetics, all 50 screen for at least 21 of them. It's a huge improvement from the situation just nine years ago, when most states only tested for four genetic illnesses. According to March of Dimes President Jennifer L. Howse, “It’s a milestone.”

Among the disorders included in the screenings are PKU, maple syrup urine disease, cystic fibrosis and sickle cell anemia. Some of these diseases are incurable but highly treatable, in particular the metabolic disorders, which can cuse mental retardation or death if untreated, but require only diet modifications for the child to lead a normal life.

In an era when scientific progress can begin to seem like it's taking us into scary directions -- from the Octomom fertility madness to the rise in genetically modified foods -- it's welcome news that the medical community, nudged by one very persistent advocacy group, has expanded its focus to identify babies at risk.

To see which tests are provided in your state, and to find out more about advocating for universal total testing, visit the March of Dimes website.

More By This Author:

Kittens Have Their Say (Aided by Nutty Six-Year-Old)

Twenty-Year-Old Kidnapping Solved

Little Girl with Bowel Disease Kept Alive on Donated Breastmilk

They Say: More Abuse, Neglect Among Bottle-Feeding Moms

Dad Gives Away 500 Lobsters For Cystic Fibrosis Awareness

JeanneSager — Mon, 05 Jan 2009 13:28:00 GMT

I'm always amazed with the ways parents will fight for awareness for their kids' diseases. But I've got to give this Dad snaps (you'll forgive me for the bad nineties era reference in a moment).

Don Hebert, a lobsterman from Marshfield, Mass., spent hours of his New Year's handing lobsters out for nothing - to spread the news about his seven-year-old son's fight with cystic fibrosis.

There's no cure for the genetic condition which causes thickened mucus secretions, often putting a strain on CF sufferer's lung function. According to CysticFibrosis.com, the leading support site for CF patients, it's caused by "a genetic mutation that disrupts the cystic fibrosis transmembrane regulator (CFTR) protein."

Today's technology allows for CF to be caught via prenatal screenings - generally the chorionic villus sampling - but that's only if a mother has that particular test (it's not required in all states). Little Michael Hebert wasn't diagnosed until the day before he started kindergartent (he's now in first grade) after his coughing fits sent his parents to doctors looking for answers. At just seven, Michael has to put on a therapy vest twice a day to help loosen the mucus in his chest, and he makes frequent visits to Boston's Children's Hospital. Life expectancies for CF patients vary (the oldest known CF survivor lived to the ripe old age of seventy-six), but many succumb in their twenties or thirties.

For the Heberts, the idea was simply to let more people know it's out there. They weren't asking for money (hence the FREE lobsters, handed out long with pamphlets about cystic fibrosis). Don and his friends spent the latter part of the afternoon plowing driveways and shoveling steps and walkways, once again for free, to spread the word around town.

In all, the Heberts handed out five hundred lobsters along with their pamphlets. I give Don snaps for creativity - and for being a good dad.

Image/Source: The Daily News Tribune

Strollerderby : cystic fibrosis

Got a Sick Child? Go Online

How You Can Keep Kids Breathing

They Say: Another Reason to Vaccinate Your Kid

Is Your Kid a Victim of Mr. Bubble Down Under?

How You Can Keep Kids Breathing

Playdate: Does Your Sitter 'Love' Your Kids?

Girl has Five Spleens, Two Left Lungs and Huge Grin

Is Your Kid a Victim of Mr. Bubble Down Under?

Newborn Screening Programs Grow, Lives Are Saved

Dad Gives Away 500 Lobsters For Cystic Fibrosis Awareness

China Detains Dad of Baby Sickened by Tainted Milk

Mom Gives Kidney to Son's Little League Coach

Bringing Sexy Back: Involved Dads

Pregnant Mom Gives New Meaning to Mile High Club