May is Cystic Fibrosis awareness month.
The only thing that means for those who actually live with CF is that May is a designated time where multiple people at once dedicate time to educate and intentionally share and talk about it.
I’m grateful for this.
I am grateful that there is a designated month where this is acknowledged and happens.
I’m grateful that so many take the time to share and fundraise.
I’m grateful that because of this that there might be someone else that I encounter in the world who might actually know a little something about what the heck Cystic Fibrosis is.
Because of May’s dedication, someone who hadn’t before, might have even the smallest glimpse of understanding about CF.
It means that there might be less chance of encountering someone who says, “Oh yeah, I know what that is, my sister caught that when she was in California”. (Yes, someone actually said that to me.)
CF is what is called an “orphan disease”. This means that not enough people have it for the pharmaceutical industry to deem it as profitable, so they have little incentive to market medications. Cystic Fibrosis research also gets no government funding for the same reason.
This is why fundraising is especially important and matters so much for those 30,000 plus who are living with CF. We are all we have AND we are doing a great job.
Two organizations that have done so much for families and individuals who are living with CF are the Cystic Fibrosis Foundation (CFF) and Cystic Fibrosis Research Institute (CFRI).
If you are looking for a place to learn more, or see how you might be able to make someone with CF’s life a little easier, please check these organizations out.
Because of these organizations people with CF have found some assistance with all that it takes to manage figuring out how to live a life with Cystic Fibrosis. This includes support and educational programs as well as funding for research that has lead to the discovery of medications to treat CF, and hopefully one day not too far away, even find a cure.
So here’s to May and it’s opportunity to officially recognize Cystic Fibrosis in the United States.
(I should mention that this is only true because of the campaign spearheaded by CFF in the mid 1990’s.)
Here’s to all my Cysters and Fibros and all those who choose not to be designated as so, but none the less are living their lives with CF.
Here’s to all those who are no longer with us in their bodies, who were taken too soon with too much pain to bear.
Here’s to those of us who live with CF, this includes all the family members who intimately witness and also feel the effects, we are aware of CF all year long.
For all of us, if you know nothing about Cystic Fibrosis, maybe consider taking some time to learn something about it.
For us, even if you know some small thing about CF, maybe consider taking some time this month to learn a little something more.
For us, consider making a donation, however large or small to CFF or CFRI, or any other Cystic Fibrosis non-profit that makes sense to you.
To make things a little easier for you I will include the links to two places I am choosing to fundraise for those living with CF this year (notice I said for those living with CF, vs CF itself).
http://fightcf.cff.org/goto/R4K or http://fightcf.cff.org/goto/KTwalks
The video below will offer you a small glimpse into what a day in the life is like for me, only one of many, with Cystic Fibrosis. (On this same Youtube channel I also have short personal interviews with other adults who are living their lives with CF sharing some of their stories. Take a peak.)
And finally, here are some other resources for those who want to learn a little more:
CFF- https://www.cff.org/
CFRI- https://cfri.org/about-us/
https://www.amazon.com/Five-Feet-Apart-Haley-Richardson/dp/B07Q4YNQV7 – Five Feet Apart- a wonderful movie called Five Feet Apart that highlights some parts of what it can look like to live with CF, especially the hospital time and the impact of “infection control”.
Cystic Fibrosis Family Connection- https://cffamilyconnection.org/
IROK Channel CF playlist- https://www.youtube.com/playlist?list=PL-intYnixfWVH2Rq9bCX_A1Hij50q9pNl