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Thelonious Johnson

Thelonious Johnson

My name is Thelonious Johnson and I am a senior at Salisbury University studying Early Childhood and Elementary Education. I was diagnosed with CF when I was a month old after having a bowel blockage at birth. CF has been a challenge at times with the many things I must do to stay healthy.   I pay attention to things in my life that those without CF do not consider; often mundane, every-day things, such as worrying about secondhand smoke, potentially harmful bacteria in hot tubs and pools, and even getting enough rest. I factor time into each day to complete PT and breathing treatments. While this is normal life for me, at times I still find it tiring and it sometimes makes me feel mentally, physically, and even emotionally drained. I have been lucky and blessed with a family and an amazing CF care team at Johns Hopkins who have always been there for me, supporting me through every avenue, ups and downs, that CF takes me.
When I was 16 years old, I was hospitalized after a micro bacterium was found in my lungs during a routine bronchoscopy. During this disappointing time, I truly learned how CF can negatively affect my life and just how much we in the CF world rely on each other to keep moving forward. I have had the privilege to participate in several studies to help further the health of everyone in the CF community.  The CF Foundation has made many of these studies and amazing breakthroughs possible. 
 In December of 2019 I was prescribed the drug Trikafta, which has helped me to maintain my weight and lung function. While Trikafta has been an amazing game changer for me and many others with CF there is still a long way to go before everyone with CF can be free from the unfortunate realities of this disease. The CF Foundation works constantly to create a life without CF not just a dream, but a reality. 
I ask that you not just help us financially to meet our goals, but to also provide your positive thoughts and a small amount of time to help make a huge difference. I ask that you consider sharing my bio on your social media, or by calling someone with CF who is stuck alone in the hospital, or by volunteering at CF events. Your help has proven to change thousands of lives for the better. As individuals we cannot conquer CF, but as a community we can do anything.


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