Last week, I had the opportunity to accompany Vertex Pharmaceuticals as the Tennessee State Senate declared May 2017 Cystic Fibrosis Awareness Month. Sen. Steve Dickerson, R-Nashville, sponsored the resolution, which received unanimous support. The month of May is also recognized as Cystic Fibrosis Awareness Month on a national level.
So why is CF awareness important? These six points may help people understand the issue better.
- Awareness doesn’t directly support a cure, it doesn’t directly make our lives easier, but it does give us a voice. With a disease as rare as cystic fibrosis, it is paramount to let as many people know as possible. Our struggles are unique. We are children, we are adults, and we are able to integrate into the day-to-day lives of those around us. By giving us a spotlight, healthy individuals may start to gain the passion to help out those with CF. I’m not talking about directly helping us personally, but getting involved in fundraising and
volunteering. The more lives we can impact, the more human power we can get on the advocacy and volunteer fronts.
- CF is often an “invisible” illness. The number of times people with cystic fibrosis have been told that they don’t look sick is surprising. But visual appearance does not always correlate with physical or mental health. By recognizing May as CF Awareness Month, others may understand the disease and look past how we appear, taking our fight more seriously.
- Visibility may influence state policy regarding government coverage and assistance. In my experience working with those outside the medical community, I’ve noticed that CF is nearly always written off as a lung disease. While lung manifestations are often the most common battles in CF, the disease affects multiple organs and tissues. If those in government can recognize the complexity of the disease, they may take this more into account when deciding coverage of CF-specific medications.
- Awareness can lead to less awkward talk for patients. Many people with CF can relate to this. As I’ve gotten older, I’ve learned to ignore the awkward feeling of explaining my treatments to someone, or even asking someone not to smoke around me. If others can become familiar with our lives, they can hopefully recognize treatments and understand how their actions can impact our breathing.
- This resolution will not raise awareness on its own. But it can give us a platform to inform others. Even though the Tennessee Senate has passed this resolution, I don’t believe everyone in the state will read about it. Instead, use this resolution as an opportunity to speak about your experience. If anything, the resolution has given us a megaphone to spread our own community’s visibility.
- Awareness can also save lives. Cystic fibrosis is complex, and more and more people are being diagnosed due to a greater understanding of the manifestation the disease may have. For those in rural communities without access to world-class CF centers, it is important for them to recognize CF symptoms early to confirm a diagnosis and get the proper help.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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