Dylan’s Domination | Cystic Fibrosis Walk | Worcester, MA
Cystic Fibrosis Walk
When: May 19, 2012
Where: UMass Medical School in Worcester, MA
Jon Ota, one of the owners of Ota Construction, and myself had the honor and pleasure of meeting with Lori Wagner and Alex Scricco and their adorable son Dylan. Dylan was diagnosed with Cystic Fibrosis, and at 10 months old he has a long hard road ahead of him.
For those who are unaware of Cystic Fibrosis:
Cystic fibrosis (CF) is caused by a defective gene which causes the body to produce abnormally thick and sticky fluid, called mucus. This mucus builds up in the breathing passages of the lungs and in the pancreas, the organ that helps to break down and absorb food.
This collection of sticky mucus results in life-threatening lung infections and serious digestion problems. The disease may also affect the sweat glands and a man’s reproductive system.
Millions of Americans carry the defective CF gene, but do not have any symptoms. That’s because a person with CF must inherit two defective CF genes — one from each parent. An estimated 1 in 29 Caucasian Americans have the CF gene. The disease is the most common, deadly, inherited disorder affecting Caucasians in the United States. It’s more common among those of Northern or Central European descent.
Most children with CF are diagnosed by age 2. A small number, however, are not diagnosed until age 18 or older. These patients usually have a milder form of the disease.
Some of the treatment information is listed below:
An early diagnosis of CF and a comprehensive treatment plan can improve both survival and quality of life. Follow-up and monitoring are very important. If possible, patients should be cared for at cystic fibrosis specialty clinics, which can be found in many communities. When children reach adulthood, they should transfer to a cystic fibrosis specialty center for adults.
Treatment for lung problems includes:
- Antibiotics to prevent and treat lung and sinus infections. They may be taken by mouth, or given in the veins or by breathing treatments. People with cystic fibrosis may take antibiotics only when needed, or all the time. Doses are usually higher than normal.
- Inhaled medicines to help open the airways
- DNAse enzyme therapy to thin mucus and make it easier to cough up
- High concentration of salt solutions (hypertonic saline)
- Flu vaccine and pneumococcal polysaccharide vaccine (PPV) yearly (ask your health care provider)
- Lung transplant is an option in some cases
- Oxygen therapy may be needed as lung disease gets worse
Lung problems are also treated with aerobic exercise or other therapies to thin the mucous and make it easier to cough up out of the lungs. These include a Percussion Vest, manual chest percussion, A-capella, or TheraPEP device.
Eri Design of Worcester, MA has been a great help in setting up www.DylansDomination.Org as well as purchasing and hosting the domain for free! The site is in its infancy but if you’re looking to donate there is a PayPal button on the site to lend a helping hand to Dylan and his parents for Dylan’s long term medical needs.
For more information on Cystic Fibrosis please visit: