In the background of everything I do, everywhere I go, every parenting moment, life moment, travel moment sits pesky Cystic Fibrosis. It does not define me, it’s just one little part, and it certainly doesn’t define this blog, but there it sits. Awkward. Unwelcome. Frankly, kind of irritating. Most of the time I am perfectly content to do what I need to do to prevent it from taking over and then get back to life.
May is Cystic Fibrosis Awareness Month and I feel it is important to take a little time, your valuable time, this month and share a little about this part of me and my life. More importantly, I want to share this part of 70,000 other people’s lives.
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What is Cystic Fibrosis?
Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. (CF Foundation)
The basics?
People with CF have a defective gene that makes mucus thicker than typical. This thicker mucus makes their lungs more likely to develop infections and prevents digestive enzymes from breaking down and absorbing nutrients in food in their pancreas.
Although CF varies from person to person since there are 1,700 known mutations, symptoms often include; salty tasting skin, persistent coughing, frequent lung infections, shortness of breath, and poor growth or weight gain despite eating.
Who has Cystic Fibrosis?
There are more than 30,000 people living with CF in the United States. There are approximately 70,000 worldwide. The Cystic Fibrosis Foundation estimates that 1,000 new cases are diagnosed every year.
You can read my Cystic Fibrosis Story in this post.
While at one point this was predominately a childhood disease with a life expectancy of about 5, now more than half of the CF population is 18 years old or older. New medications and treatments have been developed in the past twenty years that have greatly increased life expectancy for someone with CF. Today the average American will live to be over 78 and the average life expectancy of someone in the US with Cystic Fibrosis is 46. That is progress. Huge progress.
Can it be cured?
As of today, no. There is currently no cure, only aggressive medication and careful treatment plans.
The good news is that today people with Cystic Fibrosis are living longer than ever before. It is still devastatingly short, but it is a drastic improvement from the 1950s when children rarely lived to attend kindergarten.
What Can You Do?
Two things.
One, support research that will advance the treatment and care and hopefully eventually cure CF. Visit the Cystic Fibrosis Foundation website to learn more about local and national efforts to support CF research.
My family is walking in the San Diego Great Strides Walk this Spring to raise money for the CF Foundation. You can help by donating on our page, sharing our team page, or finding a Great Strides Walk in your area.
Two, spread awareness of Cystic Fibrosis.
- Share this page and other posts about Cystic Fibrosis.
- Share tweets and posts on the Cystic Fibrosis Foundation website.
- Wear a T-Shirt that Supports CF Research or Invites Questions (which also comes in new colors now – the Heather Blue is my current favorite)
Life with Cystic Fibrosis
Cystic Fibrosis is just part of life – my life any ways and the life of the thousands of people with Cystic Fibrosis. Integrating all of the treatments and learning to live life without really feeling well takes practice and I don’t have it all figured out by a long shot – but this is what I’ve learned so far;
Doctor Visits with Kids
If you’re a parent and you have a chronic illness then having kids tag along for doctor visits are just one of the fun circus acts you will learn to perform. Here are some of my experiences and tips.
Parenting with Cystic Fibrosis
Parenting is hard. Parenting twins is hard. Parenting with a chronic illness is hard.
I honestly think parenting is hard regardless. As moms we are people and every person has their stuff – their stuff that makes life harder. For me, that stuff is Cystic Fibrosis.
I definitely do NOT have all the answers for how to handle this, but here is what I have learned:
