I could spend hours tellin you my story. I could probably write a novel about my story so this is the short version. If you didn’t know me or just passed me on the street, I look completely normal. On the inside, I’m dying and I fight everyday just to stay alive, you would never know it just by looking at me. I was born with Cystic Fibrosis and diagnosed at age 3. Most people if you were to ask them, they have no idea what CF is. Cystic Fibrosis is a life threatening genetic lung and digestive disease. In the United States alone about 30,000 children and adults suffer from this disease (70,000 worldwide) and about 1,000 new cases are diagnosed each year. CF is caused by a defective gene and its protein product that causes unusually thick and sticky mucus. This mucus clogs up the lungs and leads to life threatening lung infections. It obstructs the pancreas natural enzymes that keep it from breaking down and absorbing food properly. All mucus in a CF patient’s body is thick and sticky, including females cervical mucus making it hard but not impossible to have children. Most males are sterile but not all hope is lost with that. Symptoms that a CF patient would have would include salty tasting skin, persistent cough a lot of times with phlegm, frequent lung infections, wheezing and shortness of breath, poor growth/weight gain regardless of appetite and frequent greasy/bulky stools or trouble with bowel movement. That is just the basic breakdown of what Cystic Fibrosis is and what comes along with having this disease. Not every CF patient is the same, some carry the most common mutation Delta F508, which I have and there are many other mutations. Depending on what mutation you have is what determines how severe of a case you have. I have been very lucky to say the least. Like I said I was diagnosed at age 3, because of a bowel prolapse. I was immediately referred to Johns Hopkins Hospital in Baltimore, MD where I was given a sweat test to see if I had CF. It was 1985 and they didn’t know very much about CF back then. I wasn’t expected to live past elementary school.
Today I am 37yrs old and going strong thanks to all the breakthroughs we have had in medicine and treatments. Alot has happened the last couple years and I live as much of a normal life as possible being a working wife/mom. It has been a whirlwind for sure and it gives me a new set of challenges to balance along with CF. But, we take it one day at a time. Although having enough treatments in a day to make it more than a full time job can be a little challenging, I still manage to make it work with the effort. I am by no means perfect with it and I own my shortcomings but that is the cross I bear putting my daughter before myself. I strive every day to be better and find balance so I can be around as long as possible to see my daughter grow up and I can grow old with my husband. Some days I nail it and others I'm looking for my phone while talking on it!
Along with walking and fundraising for Great Strides, I run a support group on Facebook called Just Breathe - A 100% Support Group for Cystic Fibrosis. It has over 3800 members from all around the world and it grows every day. Here we educate based on our experience, give advice and just listen to each other on those days we just need an ear. I have restarted my blog called My Chronically Fit Hotmess Life. I use this as platform to take you on my journey with CF as a mom/wife, educate on CF topics and life topics in how they relate to CF and to just talk about my hobbies/life interests. I have connected my blog to my group and I have been working to do live discussions and Q&A's in there especially to help the newbies who are recently diagnosed or new parents to the CF world. One of my goals in 2020 is to get more public speaking engagements and have my story and my blogs reach far and wide. I love doing what I can for our community, whether it’s keeping in touch with others with CF through the supprt group I run, advocating for them, giving them support, answering difficult questions, doing treatments with them over video chats etc., or participating in any research study I can get in at Johns Hopkins and fundraising in any way possible. CF has never slowed me down no matter how many times over the last 10 years it’s landed me a hospital stay. I get back up, I fight every day, I am a CF Warrior. We are all WARRIORS.
We have made so many advancements to extend the lives of those with CF including myself. But sadly it’s not enough. Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. We need a cure and we are so close. BECAUSE OF THE EFFORTS OF THE CF FOUNDATION AND EVERYDAY PEOPLE LIKE YOU WHO DONATE TO HELP FUND RESEARCH FOR NEW TREATMENTS, EDUCATION, AND CF CARE TO NAME A FEW, CF PATIENTS LIKE MYSELF AND OTHERS AROUND THE NATION GET TO EXPERIENCE THOSE TOMORROWS WE WALK FOR!!!! ALSO BECAUSE OF THE TIRELESS EFFORTS OF THE CF FOUNDATION AND PARTNERS IN 2019 TRIKAFTA WAS APPROVED, THE LATEST DRUG TO TREAT THE UNDERLYING CAUSE OF CF. IT COVERS 90% OF THE POPULATION AND HAS BEEN LIFE CHANGING FOR THOSE OF US WHO ARE ON IT, MYSELF INCLUDED!! THIS YEAR JESSICA'S MAFIA FOR A CURE IS BACK CONTINUING TO HELP BLOW CF AWAY! WE ALWAYS TRY TO GO BIGGER AND BETTER EVERY YEAR. I ENCOURAGE YOU TO PLEASE SHARE THIS LINK TO MY PAGE WITH OTHERS TO HELP GET DONATIONS. I THANK YOU VERY MUCH FROM THE BOTTOM OF EVERY CF PATIENTS HEART <3 REMEMBER TO ALWAYS LIVE*LAUGH*LOVE :) JOIN ME IN THE FIGHT!!!!
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