Today is May 1. The first day of a month dedicated Cystic Fibrosis Awareness. I think if I stood on the street and asked people the question “What is Cystic Fibrosis?” I would get a very mixed bag of answers. Not everyone knows what CF is. I didn’t. My husband didn’t. We were told that Melanie had Cystic Fibrosis and our reaction was “What is that?”. We had never even heard of the disease. Today, every state includes the test for Cystic Fibrosis as part of their new born screening. It wasn’t that way 20 years ago. Not even 15 years ago when Rosie was born. I’m thankful that it is done on every baby born in the US, but I still wonder if every parent knows what CF is. My guess is no.
And yet we are loosing our children to this disease everyday. I opened Facebook this morning and there it was. Another post saying breathe easy with someones name and a picture of purple candles burning in memory of another CFer taken way too soon. I didn’t realize how much one could hate a word or phrase. I hate the words “breathe easy”. Yes this child is breathing easy now, Melanie is breathing easy now as are so many others. But what I wouldn’t give for her CF to have been cured.
There have been many advancements made over the years in the treatment of CF. For the first time there are medications becoming available that treat the cause of the disease. Just like no two people are the same, not all CF mutations are the same. So many with CF are anxiously awaiting the day the new medication is approved for their specific mutation. It’s a huge step in the right direction to be treating the cause of the disease. Up until now it has been treating the symptoms and usually after the damage has been done. Living with CF is a death sentence. It’s not quick and painless. It’s a slow painful, difficult process that usually takes many years. For Melanie that number was 18. For the young person who lost the battle today the number was 20 years. Yet we have known many who have not made it that far. Our world needs a cure to this awful disease.
Unfortunately, finding a cure costs money. The CF Foundation reports that there are aprox. 30,000 people with CF living in the US. In the medical world that is considered a small number so CF doesn’t get as much attention as other diseases. So it’s up to the parents and loved ones to help raise money and speak out to bring awareness to the need of those suffering with Cystic Fibrosis. Maybe if more people were aware, there would be more funding.
It’s easy to go on with our daily lives and take our health for granted. Even for those of us who don’t live a “healthy” lifestye, we don’t think about how blessed we are to just be able to breathe much less live our life the way we want to.
I saw a meme that said the month of May is 31 days out of the year that we shout a little louder about CF. Those who live with CF and their loved ones never stop raising awareness, but this month we shout a little louder. All over the country this month there are walks to raise awareness and money for CF and the CF Foundation who have been essential in developing new treatments for this killer. The walks are called Great Strides. I encourage you to look up and attend a walk near you to show your support for those battling this disease. You can find a walk near you at this link www.cff.org and look for the Great Strides logo. If you are local and want to show your support for our team you can go to our team page for information by clicking on our team name Mel-Rose Strollers.
Thank you for taking the time to read this post. If even one person knows more about CF then it was worth writing.