The Invisible Enemy
A normal morning, the sun rises and it's time for cereal and cartoons. The birds are singing and the dew settles onto the sharp blades of grass. Everything seems normal and peaceful. Normalcy is the illusion that keeps the family that is on the battlefield squaring off against CF sane. Cystic Fibrosis is an incurable genetic condition that dramatically shortens the lives of children and young adults by allowing thick mucus to form in their lungs. The thick mucus allows bacteria that do not affect normal lungs to colonize and create infection that slowly destroys lung tissues. Consequently, those affected by CF are more susceptible to common illnesses that can deteriorate rapidly into extended hospital stays, or worse. The thick mucus produced in the bodies of those with CF also affects the pancreas. Enzymes necessary for the very basic function of digesting food must be taken with every meal in order to allow a person with CF to absorb any much needed nutrients.
There are only a handful of people that battle this disease, and our son is engaged daily in the fight. He starts his day with a 1 hour regiment of inhaled therapies and physical therapies before he attempts to be himself, a seemingly normal active 4 year old. When he deteriorates, the treatments quadruple as a last resort before a 2 week hospitalization requiring around the clock intravenous antibiotic treatments. The hospitalizations are grueling because as parents, you know it is necessary but the words "daddy, don't let them do this to me" will haunt us forever.
Hope is what keeps us going. There are drugs in development that are more promising than they have ever been. To bring those drugs to market funding is desperately needed but due to the rarity of this condition, it is often passed over for more common diseases. Drug companies have very little incentive to produce a drug which may take decades of research and the investment of hundreds of millions, when the payoff is access to only 30,000 patients. Some of the best drugs to date have been developed through private donations.
There are things that the community can do to help. The Cystic Fibrosis Foundation's Great Strides Walk is being held in Warrenton Virginia this year. The event will be held on May 22nd at Waters edge pavilion. Through CFF's strategic investments, the life expectancy of someone with CF has greatly improved, but it is still unacceptably short. People see a number and it helps them feel better for a moment, but that number doesn't indicate the quality of life. The current median life expectancy represents a struggle where you are short changed at the end. CF is a sleeping giant, on some days you can almost forget it is there, but it quickly reminds you. In the community, hand washing and keeping illnesses at home could make a world of difference to someone with CF. A common cold could spawn into a critical case of pneumonia very rapidly. There are many ways to join in the fight against this disease. Knowing CF exists represents the first part of any battle, know your enemy.
To join our Great Strides campaign; Collins Fighting Force United! <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=7506&idUser=443756">Click Here</a>
-Brian Stalcup
A normal morning, the sun rises and it's time for cereal and cartoons. The birds are singing and the dew settles onto the sharp blades of grass. Everything seems normal and peaceful. Normalcy is the illusion that keeps the family that is on the battlefield squaring off against CF sane. Cystic Fibrosis is an incurable genetic condition that dramatically shortens the lives of children and young adults by allowing thick mucus to form in their lungs. The thick mucus allows bacteria that do not affect normal lungs to colonize and create infection that slowly destroys lung tissues. Consequently, those affected by CF are more susceptible to common illnesses that can deteriorate rapidly into extended hospital stays, or worse. The thick mucus produced in the bodies of those with CF also affects the pancreas. Enzymes necessary for the very basic function of digesting food must be taken with every meal in order to allow a person with CF to absorb any much needed nutrients.
There are only a handful of people that battle this disease, and our son is engaged daily in the fight. He starts his day with a 1 hour regiment of inhaled therapies and physical therapies before he attempts to be himself, a seemingly normal active 4 year old. When he deteriorates, the treatments quadruple as a last resort before a 2 week hospitalization requiring around the clock intravenous antibiotic treatments. The hospitalizations are grueling because as parents, you know it is necessary but the words "daddy, don't let them do this to me" will haunt us forever.
Hope is what keeps us going. There are drugs in development that are more promising than they have ever been. To bring those drugs to market funding is desperately needed but due to the rarity of this condition, it is often passed over for more common diseases. Drug companies have very little incentive to produce a drug which may take decades of research and the investment of hundreds of millions, when the payoff is access to only 30,000 patients. Some of the best drugs to date have been developed through private donations.
There are things that the community can do to help. The Cystic Fibrosis Foundation's Great Strides Walk is being held in Warrenton Virginia this year. The event will be held on May 22nd at Waters edge pavilion. Through CFF's strategic investments, the life expectancy of someone with CF has greatly improved, but it is still unacceptably short. People see a number and it helps them feel better for a moment, but that number doesn't indicate the quality of life. The current median life expectancy represents a struggle where you are short changed at the end. CF is a sleeping giant, on some days you can almost forget it is there, but it quickly reminds you. In the community, hand washing and keeping illnesses at home could make a world of difference to someone with CF. A common cold could spawn into a critical case of pneumonia very rapidly. There are many ways to join in the fight against this disease. Knowing CF exists represents the first part of any battle, know your enemy.
To join our Great Strides campaign; Collins Fighting Force United! <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=7506&idUser=443756">Click Here</a>
-Brian Stalcup