As many of you know, my niece Alexandra has Cystic Fibrosis. She has fought it bravely for 24 years. Recently, she needed yet another “tune-up,” or series of treatments to boost her declining pulmonary functions and weight. She’s had a PICC-line in her arm for almost four weeks now, receiving three new and very strong antibiotics. However, unable to catch a break, she became ill this week with something her CF doctors feel is viral. Prompted by her fever and the concern of her home health nurse, she went to our local Emergency Department to be seen and her experience there has led me to write this.
The ER physician who examined Alexandra knew nothing and I mean nothing about CF. In fact, his immediate diagnosis was that she had pneumonia based on her lung sounds and chest x-ray; to which he informed her, “Looked like shit.” And that he was going to send her home on an antibiotic. After my sister explained to him, again, that she was on three very strong antibiotics (which he was not familiar with, but disagreed with their effectiveness in treating cf) and explained that her x-ray looked like “shit” because she is a twenty-four-year-old with Cystic Fibrosis, he had the decency to look mildly sheepish. He then said, “You probably know a lot more about CF than I do.” To which my sister replied, “Yes, I’m sure I do.” Taking that as his cue to contact her CF doctors in Buffalo, he did so and Alexandra was soon sent home, after receiving some fluids. Her care will continue to be managed from Buffalo.
Now, I am not writing this because I want to trash our local hospital- not at all. I am writing because I feel the need to continue to raise awareness and educate EVERYONE. Yes, even doctors and other medical professionals. I was shocked at how little this physician knew- not only his lack of knowledge, but his lack of humility. Hey buddy, you don’t know what the hell you’re talking about; so call someone who does.
Cystic Fibrosis is the NUMBER ONE MOST COMMON GENETIC DISORDER- read about it. It’s so common that it’s part of the Newborn Screening in most states across the US. You might be surprised by the number of people you may know who have CF, or carry the CF gene (to which there are over 1200 mutations). You can receive more information on the CF web site, www.cff.org . I implore you to take five minutes out of your day and educate yourself about the disease and the latest treatments and therapies that have been developed.
I feel it important to recognize that many people have causes and charities that are very close to their heart. This is most often because they or a loved one have suffered in some way with that situation, be it a disease, hunger, abuse, animal rescue, poverty- the list could go on forever. People can be very passionate about their cause and this world needs them. It’s because of these people that we continue to become aware and educated. People who are fervent about raising awareness and money for cures, shelters, clothing, and food banks- without them what would become of these causes?
The Cystic Fibrosis Foundation relies solely on the support of individual donations. That means the foundation does not receive federal funding of any kind. The money that goes towards life changing research, 90% of each dollar raised, comes from people like you and me. I am passionate about raising money for the Cystic Fibrosis Foundation because I have two nieces afflicted with this disease. I am passionate about educating people about this disease because my son and I are both carriers of the CF gene. I am passionate about saving and improving the lives of thousands of people.
May will soon be here- thank God after this winter! May is National Cystic Fibrosis Awareness Month and the beginning of our local fundraising endeavor for the Great Strides Walk to Cure Cystic Fibrosis. What can you do? Start raising money now, donate at www.cff.org , spread the word and continue to raise awareness and educate people about this disease.
If you have not already, I encourage you to read An Interview with a CF Mom on my blog and step into the shoes of a family with two children with CF, https://amessageofmeanfrommeghan.com/an-introduction-to-real-women/an-interview-with-a-c-f-mom/ .
Lastly, to the doctor who treated my niece,
“Real knowledge is to know the extent of one’s ignorance.” –Confucius
I hope you at least Googled CF after she left.