Category Archives: fibrosis

10 Things about Cystic Fibrosis You Don’t Know

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May is cystic fibrosis awareness month. Until my daughter was diagnosed at birth with CF, I had no idea what the condition was. And while most children are now being diagnosed throughnewborn screening, there are still many children out there who are ill with parents struggling to get a correct diagnosis. CF presents differently in each patient, but most will have frequent respiratory illness, trouble gaining weight, foul smelling stools, and salty tasting skin. Here are some little known facts about CF.

1. Nearly 1,000 new cases of CF are diagnosed each year.

2. Everyday a baby is born with CF and everyday someone dies from CF.

3. 1 in 31 Americans is a symptomless carrier of the CF gene and doesn’t know it.

4. In 1 out of 400 American couples, both are carriers of the CF gene and usually, neither one knows it.

5. If both parents are carriers of the CF gene, there is a 25% that each child they have will have CF.

6. CF related diabetes is a third type of diabetes that no one talks about. It is similar to type 1 and 50% of those with CF will develop it. There are no medications to help.

7. Doctors advise people with CF not to spend time together and must keep their friendships to an online status.

8. The main “problem” in CF is that chloride (salt) cannot pass properly through the cell wall. This is what makes the normally thin mucus in our bodies thick and sticky, trapping bacteria and clogging the lungs and pancreas.

9. Salty ocean air has been shown to be beneficial to those with CF, helping them to breathe better.

10. The CF Foundation was created in the 1960s by concerned parents. Because of their dedication and hard work, treatments have been created to raise life expectancy from age 8 in the 1960s to age 37 today.

Why This Woman Couldn’t Keep Her Cystic Fibrosis a Secret Any Longer

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After watching one too many videos of people in need of lung transplants, 23-year-old Christina Davidson called her mom with an idea.

It was 3:30 in the morning, but Christina’s mother came over right away and helped her daughter create the powerful video below. In it, Christina shares her own story with the world through handwritten signs.

“I have cystic fibrosis,” one of the first signs reads. “My parents and I kept it a secret for most of my life. I wanted to feel ‘normal.’”

Before Davidson, who lives in Nashville, posted the video on her Facebook page, few people knew about her disorder, The Tennessean reported.

“I’m trying to raise awareness because one day, Facebook friends, it’s going to come down to you saving my life,” Davidson wrote in her Facebook post. “Let’s share this with everyone we know.”

Since Davidson first shared the video on December 19, it’s gotten more than 11,500,000 views. The viral response has prompted her to start the Christina Davidson Foundation, her own nonprofit.

Hugh Jackman Surprises Wolverine Fan With Cystic Fibrosis in an Epic Way

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Domenic, 9, from Australia, is a huge fan of actor Hugh Jackman and the character he plays in the X-Men movies, Wolverine.

Domenic was diagnosed with cystic fibrosis when he was a newborn, according to the YouTube video below. Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe, according to the Cystic Fibrosis Foundation.

With the help of the Make-A-Wish foundation, Domenic made a visit to Australian radio station KIIS 1065 where he got to speak to Jackman on the phone. What the little fan didn’t know was that Jackman was actually just in the other room. The smile on Domenic’s face when Wolverine himself bursts in is priceless.

18-year-old with cystic fibrosis explains what it feels like to be in a coma

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A coma patient lies in bed at Sant’Anna hospital in Crotone

In a recent video, 18-year-old Claire Wineland explains what it’s like to be in a coma.

Turns out, it’s really freaking weird.

Five years ago, Wineland, who suffers from cystic fibrosis, a genetic disorder that affects the lungs and digestive system, had to be put into a coma for two weeks after developing a dangerous post-surgery infection in her lungs.

To be clear, her coma was not caused by trauma to the brain, the usual source of naturally occurring comas.

Rather, Wineland was in a medically induced coma, meaning that her doctors used drugs to keep her continuously sedated while they tried to heal the infection.

Wineland describes having vivid dreams throughout her time asleep, and explains that these dreams would often include indirect references to what was happening in the waking world around her. She says,

“Everything that happens in the real world, you hear, you’re aware of. You kind of know what’s going on. But it goes through this weird filter thing in your brain… And then, it turns into something else once it actually hits your consciousness.”

For example, she says that the “best part” of the coma was her “Alaska hallucinations.” Before her surgery, Wineland had never been to Alaska or had any particular interest in it. But in her coma, she dreamed persistently that she was there. She recalls,

“It was so beautiful. It was like pine trees and coves… And I remember just sitting there and staring at the most beautiful scenery ever for hours and hours … It would be freezing cold, but I didn’t care.”

The answer as to why her unconscious mind seemed obsessed with Alaska finally came when Wineland discovered that she had been “getting ice-packed the whole time.” While asleep, she had had a very high fever, and her medical team had packed ice all around her. Somehow her brain converted that coldness into a whole frozen, Alaskan landscape.

A particularly intriguing aspect of Wineland’s coma experience is that people’s voices would impact the tone of her dreams. She says, “If I liked the person who was talking and I felt safe there, it would affect what was going on in my head.” When surrounded by loved ones, she would dream of beautiful, safe spaces.

But when the people speaking were strangers, she felt less secure. She explains, “it was always strange, and I had no idea where I was, and I felt kind of lost.”

Wineland found her weeks asleep educational. She says,

“I learned so much from that experience. … It showed me who I care about, and who makes me happy, and … how our own minds can be manipulated.”

This video is one of many that Wineland has produced about living with serious illness.

Her sense of humor and enthusiasm for life are contagious, and it’s worth checking out her YouTube channel, The Clairity Project, for insight into such topics as “Tips for Interacting with a Sick Person” and “The Upside of Being Sick.” (Apparently, the concert seating is pretty sweet).

Having Cystic Fibrosis Changes Everything, And This Woman’s Life Sheds Light On How That Looks — VIDEO

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In many ways, Caleigh Haber is your typical, fun-loving 24-year-old: She loves Beyoncé, Ellen DeGeneres, sushi, and her dog, London. She’s an amateur painter and a trained pastry chef, and she has an infectious laugh. She’s alsoan adult living with cystic fibrosis.

Cystic fibrosis (CF) is a genetic disease that affects the lungs and digestive system. CF causes people to produce unusually thick, sticky mucus that disrupts proper lung and digestive function. It’s a serious, life-threatening illness; when Caleigh was diagnosed with the disease on the day she was born, she was given a life expectancy of less than 18 years. Now well past that point, she’s still fighting strong as she waits for the double lung transplant that could save her life. In a recent video, Caleigh talks frankly about what it’s like to live with an illness that requires her to have supplemental oxygen, a feeding tube, and breathing treatments four times a day. However, she also discusses the things that make her happy—a list that ranges from the Giants to her dog to her medical team. Tremendously likable, Caleigh is funny, warm, and charismatic. Despite the very real difficulties she faces, Caleigh’s love for life is palpable. You’ll find yourself instantly rooting for her.

Caleigh’s story is part of “The Happiness Stories,” a video series from filmmaker Ron Parida that documents the lives of people living with chronic illnesses. As The Happiness Stories YouTube channel suggests, the series is focused on both raising awareness of these illnesses and spreading joy. Parida writes, “Happiness is a CHOICE we all have, and the goal of this project is to show this through mini documentaries in the hopes of inspiring.”

At the end of the video, Parida reminds viewers that Caleigh is on a list for a double lung transplant for over a year, as she waits for a suitable donor. This video is a perfect reminder of why organ donation is so important, and of why we all should sign up. As Parida asks, when it comes to organ donation, “WHY NOT?” Organ donation costs the donor nothing and can save many lives. Find out more about how to sign up to donate here, and learn more about Caleigh Haber and her fight against CF at Fight2Breathe.

A New Normal: Life at 25 With Cystic Fibrosis

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(CBS) — As I started my third week of IV antibiotics, I was tired 24/7. I coughed all night long and barely slept. Every bite of food was a struggle to keep down.

Rachel-Whidden

I began to worry that the medicines that have always done me right were beginning to lose effectiveness. I started to flash back to the moment I first heard my doctor mention the phrase “end stage” and I knew my life was about to change forever.

I was immediately taken back to watching a delivery man fill my hallway with oxygen tanks. He showed me how to use my oxygen concentrator and explained how to check my oxygen levels.

I started once again to notice the familiar dark blue hue that fills my lips when the oxygen in my body is too low.

I was scared.

Getting sicker doesn’t always happen gradually. It can hit you out of nowhere and leave your head spinning. It can happen in the blink of an eye.

Last July, I spent a week road tripping halfway across the country and Canada. I had no idea that from the time I got back until now I would spend three months and two weeks inpatient, with three surgeries, and three weeks on home IVs.

It feels like the new normal.

I continued my week of IVs and added in extra breathing treatments. I started covering the lack of food I was ingesting with extra tube feedings, a formula high in calories and nutrients. I connect to a small button like tube in my stomach and it slowly feeds me while I sleep overnight.

I did everything I possibly could and now I feel a little better, to the relief of all my friends and family who have watched me struggle this past month.

At 25 years old, I’m not a girl who is content to lay in bed. I’m not a girl who passes up a chance to go out with my friends. So I’ve stubbornly managed a few movies, an improv show starring my wonderful childhood friend, dinners, and a perfect Valentine’s day with my family and the people and puppy I love most in this world.

I couldn’t bear missing out on any more life.

I’ve rescheduled my sinus surgery for March dues to some insurance issues and have many, many appointments before then. I’m excited to get some relief.

Having more problems than normal makes me feel like maybe I’m complaining. My Facebook statuses and updates have been more about my stress over my medical equipment breaking or how I’m having trouble getting the medicines I need.

I’ve said it before and I’ll say it again: I have cystic fibrosis, but it doesn’t have me. It never will.

I’ll fight this tooth and nail and I WILL come out on top.

Next week’s goal? Get the old me back. Get those workouts going again.

Breathe in and breathe out and know that I can beat this.

CF puts up a hell of a fight, but with my determination and all the encouraging people I have in my corner, it doesn’t stand a chance. Challenge officially accepted.

Blood Test Can Detect Cystic Fibrosis In Infants

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A blood test has been created that will screen infants for several forms of cystic fibrosis immediately after they are born. This will allow them to administer treatment much sooner if it is necessary.

Previous methods took at least two weeks to find results. Cystic Fibrosis affects 30,000 people every year in the US, and it is a genetic disorder where mucus builds up in the pancreas and lungs.