I know that Kylie's posts have been fun, but today I would like to talk about something serious.
Today, I want to talk about a disease that effects around 70,000 people (world wide).
70,000 people world wide you say, gosh that is just a small fraction of people, but what if I told you that %60 of those 70,000 people were children?
I am talking about a disease called Cystic Fibrosis.
What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
clogs the lungs and leads to life-threatening lung infections; and
obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 40% of the CF patient population is age 18 or older.
The predicted median age of survival for a person with CF is more than 37 years.
Adding tomorrows every day expresses the mission—and results—of the Cystic Fibrosis Foundation’s steadfast efforts to extend the length and quality of life for people with cystic fibrosis (CF). CF presents daily challenges for approximately 30,000 Americans. But life with the disease is far different today than it was 50, 30, or even 10 years ago.
Perhaps the best evidence that many people with cystic fibrosis are living longer is the fact that more than 40 percent of the CF patient population is now age 18 or older. Recently developed therapies and specialized care have enabled people with CF to gain greater control over their disease. So, children and adults are not only living longer, but also living a better quality of life.
People living with cystic fibrosis must follow a regular treatment routine to stay healthy and maintain optimal lung function.
Most often, treatment for cystic fibrosis begins with techniques to trigger strong coughs that help loosen and clear thick mucus from the airways. Of course, airway clearance is just one part of the treatment routine. Nutrition and drug therapies are also important for children and adults with cystic fibrosis.
Now I would like to introduce you to someone living with Cystic Fibrosis.
Meet Joshua
Joshua is 20 months old, and he was diagnosed with CF when he was ten days old. This was the most devastating news new parents could have ever received. His parents thought that Joshua was perfectly healthy. He looked fine, and they thought it was impossible that he could be sick. That's the thing about CF. On the outside these guys look great, but on the inside things are terribly wrong. Joshua has to take several medications and do several difficult breathing treatments every day just to keep his lungs healthy. He cannot absorb fat from his food, therefore, he must take medicine every time he eats just to gain weight. His parents believe that God has helped Joshua stay healthy this far. He has not had any respiratory infections that required hospitalization, and he is in the 90th percentile for both height and weight. They have learned to live with this disease and make the best of their lives with it, but they and thousands like them, would love to see a cure in Joshua's lifetime. Please help us make CF stand for Cure Found instead of Cystic Fibrosis. To learn more about CF and the CF Foundation, visit www.cff.org.
On Saturday May 2, 2009 Joshua's mother is going to participate in a walk, called Great Strides. It is the Cystic Fibrosis Foundation's largest and most successful national fund-raising event. You can help Joshua and thousands of children just like him by donating to this great cause.
Joshua is a beautiful baby. I have held this little guy in my arms and loved and kissed on him many times. I love this child and his parents as if they were my own family. If you would like to make a donation to help Joshua and his parents, please click on this link and follow the directions to a brighter future for Joshua and countless others. http://www.cff.org/Great_Strides/ElisabethPhilbrick6031
Thank you for your support.
Sincerely,
Cece