Sunday 14 August 2022

CF - The Disease that doesn't acknowledge others

 


One thing that this pandemic teaches is that whatever comes up including a pandemic, CF will say these three words: Hold my beer. 

It would then begin to show its might as to who's really at the head of the "food chain". Cystic Fibrosis [CF] will not play second fiddle to anyone, including COVID-19. 

CF is not as widely known as COVID has become, yet it maintains its status as one of the celebrities in the disease world. It's global in reach, it impacts people of various ages, it can significantly impact families and their considerations for just about everything, and it's EXPENSIVE to treat; at least here in the Caribbean where there are no resources allocated to it really. 

CF is in a class of its own. It doesn't compromise on its standards as a disease. It remains virtually unstoppable. It still is a serious illness. It still impacts entire families though it may be just one member who has the actual illness. School/work life is impacted on the part of the sufferer as well as those who interact with them. 

The expenses of caring for someone with CF are staggering. Parents often feel the brunt of the expenses until the student reaches around 18 years old or just beyond. The saga expands to show this student in post-school life can't support themselves given the demands of the workforce. 

Finding work that pays them the required amounts given their limited experiences is impossible; the allocation of unprecedented sick days is slim to none; establishing their own business that supports them immediately is at best stressful due to a variety of factors too numerous for this article, and insurance companies withhold support as they are no longer on their parents' policies but must now obtain their own.

 The limited lifespan of CF sufferers is a cause for concern. Given that COVID-19 negatively impacts those with co-morbidities; can you imagine those who catch it one way or another? The impacts for them intensify and the outlook doesn't look pretty. Their ability to breathe is further impacted negatively. 

  • Without medication and medical care, the life of a person suffering from CF can be severely shortened. 
  • Medications run around US$6000 monthly 
  • Doctor visits are not cheap since no one in Barbados treats it, travel is required to obtain treatment for the sufferer. 
  • Our foundation can help once we have the resource, but they too are significantly reduced given the suppressed market within which we are operating. 
We need more volunteers. People who are seriously committed to serve in a variety of areas. The demands of CF never stop. Would you help us today? Visit our presence and identify who you would like to assist and from when. It can be from a standpoint of time and money or a combination of both. 

The money would be things like sponsorships, donations, provision of fundraiser programs and ideas that facilitate the raising of significant sums while still being safe. Two people with CF can't even be in the same building. 

Time, we are looking for volunteers, researchers, planners, support team members, runners, writers, and a whole lot more. Make contact via our website cfbarbados.org as to how you would like to assist. We welcome your input. 

We thank you for your support over the years and look forward to your input going forward. Have an amazing day wherever you are in the world.