A RunSickboyRun News Story Teaser

The full story is set to launch tomorrow, but I figured I'd have you guys read the teaser...

Patient launches worldwide web hub for "cystas" and "fibros"

Ronnie Sharpe stares ahead as he runs, his breaths shallow and his pace slow. He sweats heavily and coughs so hard that ribs protrude from his thick torso. Frequently, he spits out mouthfuls of phlegm.

The 29-year-old Tucson native obsessively looks at the sports watch clocking his 30-minute goal. Gavin DeGraw’s “Free” plays on his iPod. He hates to run, absolutely loathes it. But he forces himself to do it at least three times a week.

Sharpe, a Catalina High School and University of Arizona graduate, has cystic fibrosis — a genetic disease that affects the lungs and digestive system, and kills half of the people who have it by the age of 37. There’s no cure and Sharpe already has lost several friends to the disease.

He’s garnered national attention recently, having won a contest sponsored by a vitamin company titled, “Fuel Your Greatness,” that asked entrants for inspiring stories. He wrote about his running. A 50-day hospital stay earlier this year inspired the running fixation and a blog called “RunSickBoyRun,” which now gets an average 300 unique viewers per day from all around the world.

To read the rest of the article, please click here

Cystic Fibrosis, Children and School - A Smooth Ride?

I wanted to post this little tid bit about children with Cystic Fibrosis and school. I get a lot of questions by CF parents about their kids attending school and my experiences while growing up. The questions range from "how did you tell the teachers" to "should I even put my child in public school" to ""did you hide your enzymes from the other kids". I of course will answer these questions on the blog at some point in the future (if I haven't already), but if you want my feelings on these subjects immediately, you can of course contact me anytime.

Please read through the small set of questions and answers and if time permits, answer some of the questions that I have listed below. We had a great discussion last week and I hope to keep the good times rollin'!

I’m worried that my child may be treated differently if the school knows he has CF.

This is a concern parents of newly diagnosed children often express. However, this is not a common complaint of parents of CF kids. For the most part, children with CF attend school just like every other child. Students with CF are entitled to modifications in school as any other child with a chronic illness would be.

Can my child carry his enzymes with him at school?
It depends. Each state has its own rules about medications in public schools. If your child goes to a private school, there’s a good chance school administrators make decisions on a case-by-case basis. In public schools, enzymes are considered medications and need to be kept in the nurse’s office. However, if your child has a 504 plan or a medical IEP*, you can request that your child be able to carry his own enzymes as a modification. The 504 plan and medical IEP fall under federal law and supersede state laws.

* IEP stands for Individualized Education Plan

My child doesn’t have enough time to eat lunch.
Request that your child be permitted to leave a couple minutes early from his last period before lunch so he can pick up his enzymes from the nurse’s office and still have enough time to eat. This request can also be made for children on a 504 plan or medical IEP.

What do I do if another student provides misinformation about CF to my child?
Use this as an opportunity to educate the class about CF. You as a parent can do the presentation yourself, or with your child. Perhaps your child would rather do it alone. But you may not want your child to be present because children can ask questions that may be harsh for your child to hear.

This article was taken from the John Hopkins CF Center

So, as a parent, have you had any negative experiences with your child and school? How does the school handle their enzymes? Do you believe the CF children should be home-schooled as to not expose them to harmful germs that other children may carry?

I'd love to hear your thoughts on this topic and answers to the questions above. Any more information on this topic will be very beneficial to the CF community.

CF Grandma Needs Our Help!!!

Here is an email I received from a concerned grandmother concerning her grandchild who has CF. I haven't come across this in talking with other parents, so I couldn't be that much help. I'm hoping that some of you guys will be able to relate and leave her some comments about what you think may be going on.

Hi Ronnie, I saw an invitation from you for queries by new parents. My daughter has a four-month-old son who was diagnosed at two weeks old; she does not have time for Facebook or even for emailing right now. Our little Aidan sleeps only around ten hours out of twenty-four; he gets so tired, sleepy, and cranky during the day but can't fall asleep. When he does go to sleep during the day he only sleeps a short time. My daughter has mentioned this problem at her treatment center (Vanderbilt) several times but they don't seem to grasp the severity of the behavior - although they do recognize he isn't gaining the weight he should, given the number of calories he ingests. I had this wild idea that maybe his electrolytes are depleted when he is so "worked up" and "hyper," and perhaps several ounces of Pedialyte could help. Table salt is added to his formula but maybe there are other elements missing from his body. Do you have any other ideas about this problem - have you heard of this problem? They are desperate for rest and peace! I live three to four hours away and cannot relieve my daughter very often! Hoping to hear from you soon, Aidan's grandmother (Name Withheld)

So what do you guys think? CF related? Did any of you experience this with your CF child (or non-CF child for that matter)? Let's help her out!

Remember Who Sees Your Attitude

- I'm thankful for the CF moms and dads out there who have a great attitude . I fully believe that you can often (notice I didn't say all of the time) find good parenting behind a healthy CFer. And before you start sending me hate mail, know that I know that this isn't always the case. But it's also important to recognize that a child will almost always mimic their mom or dad's attitude. If you're a mom who panics over the small stuff, your kid will probably panic too. If you're a dad who feels sorry for himself and the situation that he's in, then your kid will most likely feel the same. Good news is it goes both ways. If a CF parent has a "go get em" we can defeat this kind of attitude, then the child is likely to feel this way too. Most importantly, the kid will feel this way even when he gets sick, when it counts the most.

- I'm so thankful for the opportunity to share my story with the Arizona Daily Star. It was quite interesting to be followed around with a camera all day, but it was also a very enjoyable experience. The photographer and the reporter were very easy to "work with" and made it very easy to act like they weren't there. I'm really hoping that the story turns out alright and will end up inspiring another CFer to take a more active roll in their health. Thank you so much Stephanie and James for taking the time to do the story.

- I'm thankful for the ease at which I'm able to get medicine. It's still hard to imagine that we live in a society in which I can pick up a telephone, dial a number, punch in a bunch of other numbers and then the next day I have a mountain of medicine to pick up. Sure, there are some snags sometimes, but the smooth times far outnumber the times there is a problem.

Not Every Run is a "Good" Run

I don't want to mislead you by the title of this blog and make you think that I'm going to be negative Nancy with this post, but I'm hoping that my pain today can is some way encourage you. Wait, don't go anywhere, let me explain. This past week, my runs have been going very well. I've been able to easily run my required time of 30 minutes and generally felt like I could continue on towards the end. In fact, my last two runs consisted of 34 and 38 minutes. The 38 minute run was a VERY good day in which I'm pretty sure I could have pushed to 45, but I had somewhere to be that night. I can tell you one thing about today though, it certainly wasn't last week.

Not even close. First, let me just say that I've felt a little off the last few days and I'm really not sure why. Not mentally off or anything like that, just kind of "CF off" is probably the best way to put it. Know what I mean? I'm a little more tired. My lungs feel a little tighter than normal. My mucus seems to be more like super glue than like flem. I'm a little achy. So yeah, I've been "CF off". Well it all kind of came to a head today during my run. And of all of the days for this to happen, today is probably not the one I would have picked.

I had a reporter and a photo journalist following me most of the day for a story due to come out in the Arizona Daily Star later this week. They literally sat with me as I did my treatments. Took my shower (no they didn't get any pictures). Worked on my computer and so on and so forth. We then parted ways for a bit, but then they met back up with me for my run. It was actually pretty awesome. The camera man came dressed and ready to run with me! I was impressed that he was willing to go that extra mile (literally) to get some real life photos of me (Thanks James, that meant a lot).

Now, for the run. As I started running, I have a feeling that I may have been trying to push my pace a little bit so I didn't look like a complete goober while James was trailing (or in front of) me taking my picture. Big mistake. I realized pretty early on what was happening so I tried to slow down my pace a bit. After what felt like an eternity, I glanced down at my watch to see how much longer of this 30 minutes of hell I had left. The watch read 10m28s. **GULP** I still had almost 20 MINUTES to go. That's when all my mind games really started to kick into over drive. There was no way I was going to be able to make it for another 20 minutes I thought.

By this time my legs were completely dead and felt like I was lugging around to logs. I was already coughing like crazy and my mucus felt like it was just sticking to the back of my throat. I had a stitch in my side that I just couldn't breath through. Pure (salt) sweat was dripping in my left eye blinding me to half of the road. I started to feel a bit faint. My right foot felt funny. I thought for sure I would stop breathing at any moment. And I had another 20 minutes of this? No way I could get this done.

Just about that time Mandi came from around the corner. She had run a different path so she could get in more miles. Following close behind Mandi and walking Jezzabel was my mom. When I first saw Mandi, I got my second wind. Seeing my mom gave me my third wind. See, they're big part of why I do this. I want to be here for Mandi. I want to be the man she deserves to have in her life forever. I don't want all of my mom's dedication in raising me to be a fighter to go to waste. And you know what else I thought of? You guys. You guys give me SO MUCH encouragement. You guys give me the opportunity to practice what I preach. If I could complete my run today, imagine what I can do when I start feeling better? I'm going to kill it!

There is a bigger point in all of this and this is it: I felt more satisfied today after my run than I have felt for any other run. So although it may not have been a "good" run, it had a great outcome. I felt very proud of what I accomplished today and it gave me some extra fuel to make it through the week. I can't say this enough: when you come across opportunities to push yourself, please, don't let them pass you by.

Caution: Harmful Fumes Ahead (for CFers)

On Thursday evening, I decided to paint my nails. I'm not much of a girly-girl, so I rarely partake in this form of pampering, but for whatever reason, I decided Thursday night was the night. Ronnie and I were watching TV, I jumped up, grabbed the the nail polish bottle, plopped back down next to Ronnie and began painting. Two nails in, Ronnie moved to the other chair. I didn't think much of it. After finishing my manicure and waving my hands in the air (who knows if that actually dries your nails faster), I moved to get closer to Ronnie in his newly selected location. As I started to get close, Ronnie lovingly said, "just so you know a little something about me," he paused, "nail polish really irritates my lungs. "IT DOES?" I replied, feeling a little bad for not knowing. How would I have known? I never paint my nails. It doesn't bother my lungs. I just didn't think about it. But after he mentioned it, it seemed like a no-brainer.

I decided to compile a list of things I know of that irritate Ronnie's lungs, in case you have little ones that can't/won't speak up:

-Smoke - this seems like an obvious one. And sure, if someone is blowing cigarette smoke in my face, I notice, but there have been many occasions where Ronnie will say, "someone's smoking, let's move" and I haven't even smelled it. This goes for other kinds of smoke also. Smoke from cigars, pipes, bon fires, burning meals, etc. After a night with a lot of smoke around, Ronnie will often cough up blood.

-Car fumes - When we're running or walking on the sidewalk of a busier street, Ronnie often complains of how the car fumes make his lungs feel and it often irritates his lungs making him cough more.

-Air fresheners and scented candles - Bathroom aerosol sprays, plug-ins, regular old candles, these often make Ronnie's lungs feel irritated and "itchy" in his words. If you're looking to "freshen" the air a little try potpourri.

-Perfume - If someone has too much perfume on (not just when spraying it) it really tightens up Ronnie's lungs. I'm not sure there's any way around this other than cutting back on the perfume usage. I do wear perfume and Ronnie has yet to complain, but when I wear it, I go light.

These are the only offenders that I know of. I didn't realize how much more sensitive CFers' lungs were. I hope this list helps.

If you have any others, please leave them here.

P.S. If you haven't made it over to www.NatureMade.com yet to see Ronnie's story, check it out. I'm super proud of him :)

RunSickboyRun Featured on NatureMade.com!!!!!

Some of you may remember me entering the "Fuel Your Greatness" contest a hand full of months ago. Good news, I won!!! It was a GREAT opportunity to spread more awareness for Cystic Fibrosis. They interviewed me by phone and I provided them some pictures for the online photo documentary. I encourage you to check it out over at NatureMade.com.

If you didn't get a chance to read the winning essay, you can check it out here.