Skip to main content

May is National Cystic Fibrosis Month


Did you know that May is National Cystic Fibrosis month? Cystic Fibrosis has devastating effects on those inflicted with the illness. If you don't know of anyone personally with CF, you can read about its effects in Dear Nobody: The True Diary of Mary Rose, but I warn you. It's heartbreaking.


 





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 (70,000 worldwide). 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.
Symptoms of Cystic Fibrosis:
People with CF can have a variety of symptoms, including:
  • very salty-tasting skin;
  • persistent coughing, at times with phlegm;
  • frequent lung infections;
  • wheezing or shortness of breath;
  • poor growth/weight gain in spite of a good appetite;
  • frequent greasy, bulky stools or difficulty in bowel movements.
Statistics:
  • About 1,000 new cases of cystic fibrosis are diagnosed each year.
  • More than 70% of patients are diagnosed by age two.
  • More than 45% of the CF patient population is age 18 or older.
  • The predicted median age of survival for a person with CF is in the early 40s.
Tips for Optimal Health:
·         Avoid the spread of germs
·         Watch your diet – high calorie and high fat diet for those with CF is essential
·         Take pancreatic enzyme supplements in addition to vitamin supplements
·         Keep sugar in check
·         Take care of your lung health by performing lung exercises

Resources for Patients with Cystic Fibrosis
  • CF Patient Assistance Foundation (CFPAF) - The CFPAF helps people with CF afford the medications and devices they need to manage their disease.
  • Social Security Project (SSP) - A CFPAF-sponsored program that helps people with cystic fibrosis apply for Supplemental Security Income (SSI) and Social Security Disability Income (SSDI) benefits.
  • CFF Case Management & Technical Assistance - A team of case managers that support CF care centers and people with CF to understand and navigate insurance, reimbursement and coverage issues. 
  • Patient Assistance Resource Library - An online database that provides documents, template letters and other tools for people with CF, caregivers and insurers.
  • CF Legal Information Hotline - A resource sponsored by the CF Foundation that provides free information about the laws that protect the rights of individuals with CF.
  • CFF Mutation Analysis Program (MAP) - A free and confidential genetic testing program for people with a confirmed diagnosis of cystic fibrosis to help make informed decisions about treatment options.
  • Spanish-Language Materials - Information about the Patient Assistance Resource Center, and the services provided, have been translated into Spanish and are available as handouts.

The above information has been taken from the Cystic Fibrosis Foundation website.  For more information, visit them at http://www.cff.org/.

Comments

Popular posts from this blog

Feature Follow Friday

Feature & Follow is hosted by TWO hosts, Parajunkee’s View & Alison Can Read.    

The goal is to increase blog followers and make friends. Basically how it works is you follow them, they follow you. Win. Win. So looking forward to making new blogging friends & following blogs!


This week's question: Do you have any furry friends?


These are my fur babies: 

This is what it often looks like while I'm busy working. As you can tell, productivity is high. 


This is Lilly waiting for her boys to come home. She'll spend the entire day just like this if she's not sleeping next to me in my office. 

This is Roscoe. AKA The Boss. He runs the show around here. And yes, he has a sweater AND a coat for cold weather. 

Book Blitz: Visions by Lisa Amowitz

Vision by Lisa Amowitz Release Date: 09/09/14 Spencer Hill Press
Summary from Goodreads: The light is darker than you think…

High school student Bobby Pendell already has his hands full—he works almost every night to support his disabled-vet father and gifted little brother. Then he meets the beautiful new girl in town, who just happens to be his boss’s daughter. Bobby has rules about that kind of thing. Nothing matters more than keeping his job.

When Bobby starts to get blinding migraines that come with scary, violent hallucinations, his livelihood is on the line. Soon, he must face the stunning possibility that the visions of murder are actually real. With his world going dark, Bobby is set on the trail of the serial killer terrorizing his small town. With everyone else convinced he’s the prime suspect, Bobby realizes that he, or the girl he loves, might be killer's next victim.

Available from:
Amazon * Barnes & Noble * Kobo Books * The Book Depository

About the Author Lisa has bee…

Armchair BEA 2012 Introductions (day 1)

First, let me start off by saying that I am very excited to be participating in Armchair BEA this year. Since this is the first day of the weeklong event, here are my answers to the interview questions:

Who are you? How long have you been blogging? Why did you get into blogging?
Well, the answer the first part of that question, I am a middle school Language Arts teacher in Florida (and probably one of the only people in a coastal city that hates the beach). I’ve been married to my hubby for 10 years and have 2 boys. My house is a constant zoo and I’m turning 30 in a few months. There is a mid-life crisis in my near future, I’m sure, but I wouldn’t trade any of it for the world.
I started blogging in December of 2011 out of necessity. Seriously. My students know how easily I am distracted when they ask me about books (I eventually caught on to their tactics), so I started blogging out of a need for more teaching time. (I should go ahead and mention that I never talked books all day—even…