Interview with Jennifer Ronnenberg: Living with Cystic Fibrosis

A close member of the Cambridge Mask Co extended family, Jennifer Ronnenberg has played a huge role in raising awareness for the cystic fibrosis community over the years. We have followed Jen’s journey closely since her lung transplant back in 2017 where her first breath went viral on the internet, 29 MILLION views and counting! Jen played an integral role in the design of one our bestsellers, The 65 Roses, and as a result has enabled CF patients from all over the world to wear a mask with pride, raise awareness for the community and most importantly instil confidence in their choice of protection.

It has been 4 years since her transplant and a tumultuous 14 months of COVID-19 pandemic mayhem, so we thought it was time to catch up with the lovely Jen and highlight this special relationship we have formed.

The love story between her and Rob is one of hope and education about cystic fibrosis.

Q: How does CF affect you on a daily basis?

Jennifer: Having had a double lung transplant, people often think I’m cured or no longer have CF, which is not true. Even though I had a double lung transplant I continue to have daily sinus and pancreas issues. I have occasional bouts of pancreatitis and take enzymes with every meal to help digest my food and to keep my pancreas from having to work extra hard. Since surgery I have also been diagnosed with diabetes meaning I take pills daily and must watch what I eat to keep things in control.

Q: When were you diagnosed with Cystic Fibrosis?

Jennifer: After having health problems my entire life, diagnosed incorrectly as asthma and pancreatitis, I was diagnosed with CF in 2006 at the age of  28 years old. It was after the birth of my son that I was “accidentally” diagnosed. The hospital conducted a newborn screen on my son and found out he was a carrier for CF, and when meeting with a specialist at the Mayo Clinic they noticed my frequent small coughs and asked if I would be willing to be tested, so in a roundabout way, due to my son and health issues, my DNA was tested confirming I had CF.

Q: How did Cystic Fibrosis affect you growing up?

Jennifer: Growing up I was not aware that I had CF, however I had frequent unexplained health issues which were assumed to be asthma and an attack of pancreatitis. All day, every day, I had a cough my entire life leading to “exercise induced asthma” or allergies related. This lead to me taking breathing and allergy medications to help, but having a “cough” was hard to deal with at times since it happened every minute of the day and even when sleeping. This constant cough set me apart from others and I was looked at differently, which made me feel self-conscious. I was also diagnosed with pancreatitis when I was 16, which is an incredibly painful disease with your body literally digesting itself. Currently I take Kalydeco weekly to help prevent attacks. Dealing with those conditions the first 28 years of my life, without knowing what they were, greatly impacted who I am today.

Q: What do you find the most difficult to deal with about your condition?

Jennifer: I love people. I love my family, friends and anyone in between. I am a hugger, with CF and especially having a transplant, it is not safe to be as affectionate as I usually am and I have to be more careful being around people. A common cold to someone with a healthy immune system could literally kill me. This means I have to be ever vigilant; wash my hands often and wear a mask are beyond simple precautions as they may save my life.

Q: You do an amazing job of raising awareness for Cystic Fibrosis via social media and your website. Do you find many people don’t know about the condition?

Jennifer: I feel, that in the 14 years since I was diagnosed with CF, there is definitely more awareness than when I first found out. I still think we have a long way to go because even though people may have heard of CF, most have no idea what the disease really is and the more people we have involved in the world, the sooner CF will stand for Cure Found.

Q: When and how did you first find out about Cambridge Mask?

Jennifer: Following a lung transplant, the first 90 days are the most critical time as the chance for problems are at the highest they will be. During this time taking precautions is absolutely necessary for the best opportunity for survival and longevity when someone like me is optimistic with a second chance at life. When in public wearing a mask is required to help prevent any type of infection or sickness that could cause harm to your new organs. In my case I had purchased another company’s mask which we later found out was not as safe as the Cambridge Mask Company products. With the popularity of a viral video showing the moment my breathing tube was removed, where my first unobstructed breaths after lung transplant took place, we discovered the Cambridge Mask Company and even had the privilege of writing a blog post on breathing. This is when we were fully introduced to this great company and the wonderful work they do.

Q: What makes a Cambridge Mask the right mask for CF patients?

Jennifer: While the CF Foundation maintains only a disposable N95 mask should be recommended for CFers, we appreciate this while knowing it is not always probable for financial or other reasons. For us, we believe having an N95 mask that will protect our lungs is critical so having an option we can rely on is necessary. Knowing the Cambridge Mask is rated N95 or higher, is reusable, and cost effective when so much money is spent on medications and doctors visits, it makes sense as an option to protect CFers.

Q: Can you give us some more insight into the story of how the 65 Roses Mask came to fruition?

the story of how the 65 Roses Mask

Jennifer: Three days after my double lung transplant it was time to remove the breathing tube and start to rely on my new lungs, which we know came from a beautiful woman named Lacey. When the medical team was removing my breathing tube, my (now) husband filmed the moment hoping to share it with me from their perspective and to maybe share it with the donor family. In order to let family and friends see this amazing moment he uploaded the video to YouTube. Around four months later it went viral and blew up around the world. It was at this point someone from the Cambridge Mask Company reached out to us asking if we would be willing to write a blog post on the topic of breathing.

Not knowing anything about these reusable masks, we did some research on the Cambridge Mask Company and other similar products only to find out the one I had been wearing was not the safe mask we thought it was. The testing data for the Cambridge Mask showed it was N95 and above rated while the other was not designed to be a virus/bacterial protective mask. Looking at the masks offered by the company, after looking at the choices of colors available, I mentioned to my husband I wish there was a purple one to represent CF as it is my favorite color as well as something is close to my heart. I told him I wish we could design one. After talking with the Cambridge Mask Company about the idea of creating a CF themed mask and the ideas I had, they asked us to submit a design. Immediately I knew what I wanted to do. My husband’s (Rob) cousin designed a beautiful purple rose for me that would be perfect. So with that in mind I played with the design and used 3 variations of the color purple to create a pattern. Cambridge loved it and decided to call it “65 Roses” in honor of CF. Thank you cousin Genna!

Q: What advice would you give to other people suffering with CF?

Jennifer: Be as positive as you can be and never give up hope. Even though life has its ups and downs, it is important to have a positive outlook. Constant stress and negativity take a toll on your heath. Even at my worst times I kept fighting and always stayed positive. Even if you have to fake it until you make it, as they say, always strive to hold on to the positive and let go of the negative. An anchor can only hold you down if you continue to hold onto it.