<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>
Dear Mr. Wilson,
I recently read your article in the Reading Eagle, and was sorely disappointed by the way in which the struggles of cystic fibrosis were painted. I realize that you were writing mainly from a human interest angle and telling the story of one family in particular. However, the family you wrote about does not reflect the attitudes of many people (families, patients) with contend with cystic fibrosis on a regular basis. If we truly want to 'redefine normal' in order to live and thrive in spite of cystic fibrosis, then stories like yours should not presume to present the mainstream 'normal' CF experience.
Additionally, the human interest angle would have been better served if you had included a link to the Cystic Fibrosis Foundation's website, or at least included a description of what CF is. Sadly, far too many people (perhaps even you and the Fortunato family) still consider cystic fibrosis to be a disease that kills children. Your article only reinforced that misperception.
Permit me to share my experience with cystic fibrosis. I hope you will pass it along to the Forutnato family to encourage them and remind them that normal doesn't have to be redefined, just better understood.
--
Because I was diagnosed at birth, I'm unable to give an account of what it was like to hear the diagnosis for the first time. I've heard my parents' version of what that was like. I was born on the fringe edge of all kinds of new developments for CF treatment, but there still wasn't much out there in terms of reading material or guidelines for my folks to go by. My mom says they basically handed her a leaflet about CF and told her that I might not live to see my 10th birthday.
That was nearly 26 years ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
Respectfully,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com
">http://livingwellwithCF.blogspot.com
</a></end quote></div>
Below is the letter I received in return. Bear in mind he's not not a particularly gifted writer. He missed the point of my letter, and didn't seem to notice that I said I have CF. The thing that really bugs me is that first he says it's not supposed to be represenative, and then in the very next sentence, he says it's representative of ANY chronic conditions?
<i>Ms. xxx,
Thank you for the response. You mentioned that you would like to have seen a description of what CF is -- down the right side of the page was a full description of the condition and what is being done in the hunt for a cure. I don't agree with you that the story portrayed CF as a disease that still is primarily a children's disease. Much of the story was given to the fact that CF sufferers are living longer and longer and the dilemma of non-pediatric doctors (especially those who have been practicing for many years) who do not have expertise with a condition that WAS primarily a pediatric concern. Frankly, I am confused as to why this article has generated such ill feeling. To me, the fact remains that nobody wants to outlive a child. And while it may seem over protective to keep a CF child away from the possibilities of bacterial or viral infections -- e.g. freshwater lakes, people with colds etc. -- can you blame the family especially when their child contracted pseudomonas from pouring herself a glass of drinking water? I understand the desire to view CF as no big deal -- but it is. Again, this was just one slice of CF from one family's experience. It was not meant to represent ALL CF sufferers, but give a little insight into the difficulties and concerns that go along with CF or ANY chronic condition.
I am sorry if the article upset you are anyone else. It certainly was not meant to.
Adam Wilson
Reading Eagle </i>
I also noticed that the article is inaccessible today. Is that just a glitch on my end of things? Is anyone else unable to view the article?
-lightNlife
