Breathing and Beating

Hi everyone , My name is Meg, I am 34 years old and was diagnosed with Cystic Fibrosis when I was 2. For those who have read this before and know about CF, thanks for your continued support, and for those reading for the first time, heres a brief summary of what Cystic Fibrosis is. 

CF is a genetic disorder that impacts nearly every organ in the body. How ? So think of the thick, sticky mucus that gets trapped in your nose and lungs during a cold.

That same thick mucus lives throughout my lungs, pancreas, intestines, nasal passages…the list can go on with locations-and so depending on the person’s primary complications, you’ll usually hear a stuffed nose, deep cough, or a lot of toilet flushing ! From a person with the disease.

CF skin is also salty, because each cell in our body has a malfunctioning transmembrane protein, resulting in dysfunction of the sodium, chloride and H2O ion transport system.

Fertility issues are also common, more for men than women, and CF-related diabetes as well.

Alright so I’m still here and I’ve made it to a nice age of 34 this year for someone with, what used to be heavily labeled as, a life-threatening disease. There’s an incredible medication that was released in 2019 that changed the quality of my life immensely. My lung function went from 40% around Christmas 2018, to over 90% the Christmas of 2019.

Thanks Trikafta !

So why are we still fundraising? 

Treatment for CF is about balance. Similar to an organ transplant, medications are a solution to one problem but there are still others remaining, or they can even cause other issues. The remedy is not always a full solution. Some people on Trikafta have had to get off of it due to reported depression or anxiety skyrocketing. And for those not on trikafta (some of us can’t be on it due to not having a certain type of CF), their current treatments most likely all have side effects, some mild but some worse than the pros of the treatment itself.

With all that said, I am so grateful for how far our community has come over the past five years. There are constantly new medications in the CF research pipeline and people are living longer. It’s hard to give a life expectancy because all of our medical histories and personal stories are so different. Yet the cloud of unknown that lingered above our heads, not knowing what tomorrow might have in store for us, never really goes away but is smaller now.

Thanks to our incredible donors, researchers, families, and friends from around the world, more of us are able to take a breath. 

The best part of having CF is that that reminder of every breath being an absolute gift, never disappears. 

On April 20 my family and I will be taking in some nice salty breaths on the OC boardwalk. Please come join us ! Luckily the boardwalk - and the breathing !-is free. If you’d like to donate or be a virtual walker you can do so on this website. Any questions please don’t hesitate , send me an email Meghan.weisbecker@gmail.com.

Again to those old and new reading this to the end, thank you. You have no idea how much it means to me and my family.

If you need a final plug to walk with us -celebrity superstar baby E. Will be making an appearance handing out free bracelets, and autographs on request.

Love you guys and Thank You always.

Breathing & Beating,

Meg