This month is Cystic Fibrosis Awareness Month. And although the Cystic Fibrosis Foundation had to cancel their biggest fundraising event of the year, they are still doing what they can to educate people about the disease.
One way is by encouraging CF patients to share their stories. Nicole Kowal lives with CF and she isn’t afraid to share her story.
"Good evening everyone, I have a little challenge for you, so you know what it’s like to live with CF,” she says in a YouTube video on her channel. "Take a straw and try to breathe through it for 30 seconds.”
She uses her channel to raise awareness about her condition, which the CF Foundation says is a progressive, genetic disease that causes lung infections, a build-up of mucus, impacts the absorption of food and makes it hard to breathe over time.
In Nicole's words, it is, "A crappy pair of jeans. One parent has to be a carrier of the jean and so does the other. And then there is a one in four chance someone could have CF."
According to the Foundation, 30,000 people in the U.S. have CF and about 180 of CF patients are here in WNY and use the foundation's care centers.
Nicole was first diagnosed at only 22 months old.
"At the time they didn't have newborn testing,” she said. “Luckily my mom is a nurse so she knew something was up cause at that time I was going through too many diapers and eating as much as my father."
Now 32-years-old, she’s an EMT, volunteer firefighter, works a full-time job and she’s involved with the CF Foundation, which raises money for a cure.
"So what the foundation does is bring hope into action,” said the Western New York Chapter Executive Director Heather McKeever. “And May is when we have our Great Strides campaign. It's our biggest campaign throughout the country. Locally, we have 10 walks and raise over half a million dollars and this spring we had to cancel all of our events.”
Instead they are holding a virtual pep rally on Saturday to still raise awareness, something Nicole is involved with.
"A majority of our money comes from this walk and being canceled is throwing off our whole system,” said Kowal. “But it doesn't mean we stop raising awareness."
When the foundation was first founded in 1955, many CF patients died very young. Now, more than half of the CF population is older than 18.
But still, it's not easy.
Nicole has had two sinus surgeries, with one leaving her without a sense of smell. She must maintain a high calorie diet and she couldn't sleep flat for years until she started taking a new medication that helped the mucus build-up.
"In the morning, it's hours and hours of coughing,” said Kowal. “I take medication at every meal. My morning medications when I eat breakfast are 16 pills and then with each meal and snack it's anywhere between 3 enzymes with a snack to 6 if I'm having a bigger, heavier meal."
Especially during this pandemic, it’s a tough time and Nicole hopes this month can put her disease into perspective.
"Being a CF patient, we have always been OCD and been very careful. We've been pros at social distancing our whole lives. I have no fear wearing a mask. I hope it brings attention to people who are sick. We take germs so seriously."
The CF Foundation released a study that found people with CF have a lower incidence of COVID-19 than the general public, but they believe that's potentially due to the CF’s community strict adherence to social distancing to begin with.
While there's still a lot of progress to be made in this disease, Nicole is optimistic.
"It's not a death sentence. We can still live life to the fullest; I certainly have no issues with fulfilling my life."
The virtual event is Saturday at 10 a.m. and can be found through the CF Foundation's page.
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May 14, 2020 at 12:26AM
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Western NY Woman Shares her Cystic Fibrosis Story - Spectrum News
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