“All infants, children, teenagers, and adults with Cystic Fibrosis are Heroes; their care givers are Angels.” ~Dr. James Benjamin, Jr., M.D.
Today, 8 September 2013, Cystic Fibrosis Worldwide is hosting the first Worldwide Cystic Fibrosis Day.
The aim of today is to spread information and education about Cystic Fibrosis and improve the lives of people born with CF.
Today will bring people together across the world to help fight for better standards of care, for equal access to care and the necessary equipment and medication that helps make the lives of those living with CF easier and ultimately to support research for a cure.
There is currently no cure.
On Friday, just in time for Worldwide CF Day, my new CF wristbands arrived from overseas. Now even when I am not talking about CF, I am still spreading the word. I live in hope that one day, in my lifetime, we will witness a cure for CF. If you would like to buy one of these wristbands go to http://www.cfaware.co.uk
Please join us and help fight CF! Join a local event in your area, give a donation or just spread the word.
Here are some handy links for Cystic Fibrosis webpages around the world:
If you struggle to open the link for America (it’s not connecting on my side as I seem to be having serious gremlins lurking in my computer of late) go to http://www.cff.org
Don’t know much about CF, here’s a few facts from CF Aware twitter page (@CFAware):
- If two CF gene carriers start a family, each baby has a 1 in 4 chance of having Cystic Fibrosis.
- Some with CF have to use nebulisers during the day. These turn liquid medicine into a fine mist which is inhaled into the lung.
- As people with CF are living longer, some develop further complications such as diabetes, bone disease, liver disease and fertility problems.
- People with CF may eventually need a liver, lung, and very rarely a pancreas or heart transplant.
- Cystic Fibrosis is the most common life-limiting genetic condition in Caucasians, yet many still don’t know what CF is.
- Children with CF need more energy than children without cystic fibrosis, but often have reduced appetites.
- In people with CF, the buildup of mucus makes it easy for bacteria to grow.
- People with Cystic Fibrosis often look younger than their years.
Together, I believe one day we will find a cure. I will always be Walking4Air and I will do whatever I can in my own small way to hunt down a cure for CF.
~ It starts with a wish. It can end with a cure ~
~ Dedicated to all those who’ve lost the fight & to those who won’t quit the fight ~
Walking4Air 