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Twelve things you might not know about people with CF, but probably should

I should preface this post by saying that the list I’ve created does NOT pertain to everyone with CF. I’m hoping that there will be a few that others with CF can relate to, but of course all people with (or without) CF are different, so this is just a list I created from things I’ve noticed in my own life and seem like common threads among all of us with CF.

A New CF Generation Begins

Brian in the swing

Growing up, I remember how structured and regimented our treatments and medications were kept in striving to keep me as healthy as possible as much as possible with the hopes of medical advancements that would help that goal be more and more achievable with the hope of a cure being on the horizon of my lifetime.  These were the days when mucomyst and manual chest physiotherapy (postural drainage with clapping on my chest, sides and back) along with digestive enzymes were the only tools of daily disease management.

It's A Wonderful World

The words leaped off the screen like a lighthouse in the storm.“FDA approves

Nutritionally Sound in a Malnutritioned Body

Father's Day Dinner

As people with CF, we are used to eating whatever we want. The message has always been to pack in as many calories as possible; it doesn’t matter what the source is. Want to pound tons of cookies, chips, and fast food? Go ahead! Don’t want to count the cost of eating junk food? You don’t have to! All that matters is gaining weight. Now that we’re living longer, the message needs to change.  We do need to think about the source of our calories.

General Health and Snacking Tips with CF

Nutrition Blog

When I was first diagnosed with CF, via the sweat test, I was roughly 130 pounds, as a six-foot tall, 26 year old. I couldn’t understand why. It turned out that I was battling CF without knowing and with no treatment plan. After a decade and a half, I’ve finally gotten to a comfortable spot with my treatments, diet, medications, life-balance, and the million other things that we constantly have to deal with. I’ve tried a number of different diets while trying to get to a healthy weight.

CF Awareness is Everyday not just May

As the saying goes, “April showers bring May flowers." I cannot believe it is already May, and I am once again thrilled to celebrate Cystic Fibrosis Awareness month. I believe that every year is an opportunity to share with the world what exactly Cystic Fibrosis is, but now, more importantly, when our community is still very much affected by the pandemic. When April quickly comes to an end, and May creeps up, I start to think of all the new information I want to include on my social media platforms.

STROLO Star: Rosie Grossbaum

May is Cystic Fibrosis Awareness month. It’s a time to shine the light on cystic fibrosis (CF) and educate others. Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. CF is a complex disease, with many layers, and it affects everyone with the disease differently.

Swim to Live

It is hard to believe it is May 2021 and over a year since the COVID pandemic put us all in quarantine and we all have faced many challenges. May is also Cystic Fibrosis Awareness month and during this month the community comes together to help others learn about the disease, share personal stories, and unite behind our mission: finding a cure for all people with CF.

Life Beyond Transplant

Organ donation is the best gift. I wouldn’t be here today without my selfless donor. Almost 4.5 years ago, I was given the gift of life of new lungs. Getting there was the struggle of waiting almost three years for those perfect lungs. Living life before transplant was difficult. I was poked and prodded every few weeks and I was in the hospital for the majority of the years that I was on the waiting list. Lung infection after lung infection, it became the most annoying and frustrating cycle.

It is About: Time

Organ donation saved my life and has brought me the joy of living far beyond what I ever thought was possible!

I was not fully aware of how much I struggled in my day-to-day life until I began my life post double lung transplant. Explaining what organ donation means to me, is fruitless, because I could never describe how much I appreciate the gifts I have received from my organ donors. And since I have three organ donors, I have a LOT to be thankful for.

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