Your chances of Cystic Fibrosis

You could be a carrier of Cystic Fibrosis and not know it. C.F. is an inherited, chronic disease that often leads to coughing, lung infections and pneumonia. The average lifespan of people with C.F. is only around 37 years old and that's actually good. In the 1950's, few kids lived to be school aged. I sat down with a family who is living with CF to find out what is being done to help these kids.

Everyone at the OSF doctor's office across from Easter Seals in Peoria knows two-year-old Brooklyn Iund. The doctors on this floor specialize in treating kids like Brooklyn who are living with Cystic Fibrosis. Melinda Iund said, "What makes it really hard with CF is that it is a certain gene and there are so many mutations it makes it hard to find a cure and fight it."

Brooklyn is the best case scenario for Cystic Fibrosis. She only spends around 40 minutes a day wearing a chest compressing vest and taking three breathing treatments, vitamins and enzymes to help her digest food. Dr. Jalayne Lapke said "It takes about 3-4 hours a day. That's separate from eating, drinking, sleeping, going to school. And when they're sick it takes longer."

One in 30 people carries a gene for Cystic Fibrosis. When two people who carry the gene have a baby, that baby has a one in four chance of having C.F. Dr. Lapke said, "Many, many many people if not most of patients with Cystic Fibrosis- when you look back, they didn't know of anyone to have cystic fibrosis in their family."

Melinda knew when she was pregnant with Brooklyn there was a chance she would have the disease, but Brooklyn wasn't diagnosed until doctors admitted her into the hospital for failure to thrive. Melinda said, "When she was a baby we used to put cream in her food so she could gain weight. Most people who have C.F. are already on high calorie diets because they take so much energy to breath-that they have to have those high calorie diets just to help their body function."

Brooklyn is at 50-percent for her height and weight. If she goes below that, she will have to increase her calorie intake and start doing more expensive treatments. Melinda said"I know a gentleman right now who is actually waiting for a lung transplant and he says his medications run on average without insurance about 10-14 thousand dollars a month."

For now, Brooklyn is as healthy as she can be and thanks to new research she has the opportunity to live into her 30's or 40's--and hopefully even longer.

There is some good news for expectant parents in Illinois. This year Illinois started screening all newborns for Cystic Fibrosis, so those babies can start getting the treatment they need before their health starts to fail.

-NewsAnchorMom Jen

Methodist Medical Center's new online healthcare program, MyMethodist eHealth, is a proud sponsor of this blog post. MyMethodist eHealth is the secure link to your doctor's office that lets you request appointments, order prescription refills, update your personal health record, and more. Sign up for MyMethodist eHealth here.

Marketing at Autism One

I was shocked and a little skeptical by products that are targeted at kids with special needs after attending the Autism One Conference in Chicago last weekend. I am sure some people think some of the products presented really do help their kids, but there probably are some product owners who are trying to take advantage of these parents. I couldn't stop thinking "Why is this product targeted at kids with Autism? These vitamins are something all kids could use. Or this comfy chair is something I would like. What's with all these products marketed for autism?"

I don't have a child with autism, so maybe those who do appreciate all the merchandise. I just wonder if the owners take the products to different conferences around the country and have new signs made for each disorder/disease. Can you just picture the briefcases full of signs: "Helps kids with Autism!" "Great for kids with Muscular Dystrophy!" "What kids with Cystic Fibrosis really need!" "The best invention for kids with Cerebral Palsy."

Maybe I am just being obnoxious here, but I felt like I was walking into a big sales pitch. There was a lot of pressure to buy from some of the people. I wanted to put on a shirt that said, "I am with the media and I am not doing any stories on your product." Maybe that way I could have looked around and not been so aggravated. Maybe it's just high pressure sales in general that turns me off.

Has anyone else dealt with this? Am I being too sensitive? Does anyone have any advice for parents who deal with this? How are you supposed to know which products might really help your child and which ones are just people trying to make money?

(This is not a jab at the conference at all. The speakers were great and I was honored to be invited. This whole topic of high pressure sales to certain groups of people just made me wonder if I am the only one who thinks this.")

UPDATE: Coincidently, I just found this article that kind of talks about this. Strange.

Here's what one parent said:

"I bought enzymes and supplements from America, which cost a fortune. I even paid thousands for a special mattress, blankets and pillows with magnets sewn into them that the sales people promised would do wonders but, of course, didn’t work.
‘Autism is seen by some people as big business.
‘I meet parents who want a cure and spend money in the hope they’ll have a normal child. I try to warn them that there is no evidence any of these things work, but they’ll often go ahead."

Just to be clear, I have talked to parents of children with autism who say their children have recovered. I think that is fabulous! Whether outsiders believe these children are autism free or not, who cares. If the child and family feel they have created a better quality of life, that is wonderful!

-NewsAnchorMom Jen