Cystic Fibrosis Week in 2019 will take place from the 17th - 23rd June, with wear yellow day on Friday 21st June
Cystic Fibrosis Month raises awareness about cystic fibrosis (CF). This month is sponsored bythe Cystic Fibrosis Foundation (CFF). Raising funds for future research is a priority; people are made aware of progress being made towards a cure.
Cystic fibrosis is a genetic, life-threatening disease which affects the digestive and respiratory systems. CF occurs in about one in 3500 live births. In the US, approximately 30,000 people have CF, whilst over 10 million people carry the defective CF gene but have no symptoms.
The primary symptom of cystic fibrosis, is the production of a thick, sticky, mucus. Mucus clogs the lungs causing persistent coughing and frequent lung infections which can be life threatening.
Thick sticky mucus can also obstruct the pancreas, stopping natural enzymes from breaking down food. As less food is absorbed by the body, this leads to complications including poor growth and weight gain. Stools are often greasy and bulky; problems with bowel movements can also arise.
- Very salty-tasting skin
- Persistent coughing, at times with phlegm
- Frequent lung infections including pneumonia or bronchitis
- Wheezing or shortness of breath
- Poor growth or weight gain in spite of a good appetite
- Frequent greasy, bulky stools or difficulty with bowel movements
- Male infertility
As most babies are now screened for cystic fibrosis, the awareness campaigns are more focussed on providing support towards treatments and finding a cure.
- Airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs.
- Inhaled medicines to open the airways or thin the mucus. These are liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer and include antibiotics to fight lung infections and therapies to help keep the airways clear.
- Pancreatic enzyme supplement capsules to improve the absorption of vital nutrients. These supplements are taken with every meal and most snacks. People with CF also usually take multivitamins.
- An individualized fitness plan to help improve energy, lung function, and overall health
- CFTR modulators to target the underlying defect in the CFTR protein. Because different mutations cause different defects in the protein, the medications that have been developed so far are effective only in people with specific mutations.
'Great Strides', is the main awareness and fund raising event of the CFF, in which people walk at one of the many organized events throughout the US. In 2011, over $38 million dollars was raised.
In a world of increasing multimedia, CFF have embraced new technologies to raise awareness of cystic fibrosis.
They offer a free iPhone app which can be downloaded from the iTunes App store.
This app educates both people interested in volunteering for the CFF and new donors, about CF and the CF Foundation.
CFF also has a popular Facebook page, a Twitter, and YouTube account.
Cystic Fibrosis Awareness is important to me because I feel like no one know what it is because no one acknowledges it. So on June 21st I dare everyone to wear something yellow for your support on Cystic Fibrosis.
I got all my information from: http://www.whathealth.com/awareness/event/cysticfibrosismonth.html
By Ellie Prouse
Disclaimer: This content about a medical condition is written by a young person and does not reflect the opinions of Young Scot. Young Scot do not take any responsibility for the information contained in this article, and should anyone have any concerns about their own health or medication, they should contact their doctor or another healthcare professional. The NHS also have online advice about Cystic Fibrosis.