1st Place, Personal Narrative
2021-22, Division 2, News Writing
By Abby Williams
Arrow
Utica HS
A week after I was born, I was diagnosed with a conditioned called Phenylketonuria, or PKU, and it meant my life would be a bit different from everyone else. I wouldn’t be able to eat meat or larger amounts of dairy, nuts, fish, or eggs because of how toxic the protein was to my brain. I’d have to stay on that diet for life in order to protect my brain from debilitating side effects, and I would have to monitor everything I eat in order to ensure I wasn’t eating more than ten grams of protein every day.
My blood is constantly being drawn in order to monitor the amount of protein in my bloodstream (which I do not appreciate thanks to my fear of needles), restaurants are a pain since it’s a hit or miss if I’ll be able to eat something there, and the worst one in my opinion: I’ve never met someone else with my disorder.
I didn’t understand my condition too well when I was younger. All I knew was that I wasn’t able to eat most of the foods “normal” kids can, and they didn’t have to constantly check nutrition labels like I had to.
As I got older, I discovered that not only were there other kids like me, but there were entire communities for people dealing with conditions like I was and their families.
One of those communities was the group of people behind Rare Disease Day.
On Feb. 28, people of all ages from around the globe celebrated Rare Disease Day 2022, a campaign designated to raise awareness for people with rare conditions.
“Rare Disease Day was started in 2008 by Eurodis, which is a non-governmental or- ganization representing rare disease organi- zations in Europe,” digital communications intern Emily Manock said, “as well as 65 na- tional alliance patient organization partners.”
Rare Disease Day aims to shed light on rare conditions.
“Our main goal is to raise awareness for those living with rare diseases so as to achieve equity in social opportunity, health care, and access to diagnosis and therapies for people living with a rare disease,” Manock said. “By focusing on just one day, the 28th/29th, it can act as a focal point for all our advocacy work, allowing us to work more effectively.”
Awareness and a strong sense of support and community are extremely important for people like me. Making people more aware of these conditions can greatly help people with rare diseases in many ways.
People can often be greatly judgmental of things that are different or that they don’t un- derstand, which is a major concern at our age. People affected by all sorts of rare conditions, visible or not, have been subjected to judgment and bullying solely for being “different”.
Everyone wants to feel like they belong, and people our age are often concerned about “fitting in” and not doing/being anything out of the ordinary so that they’ll be just like ev- eryone else.
But people with rarer conditions don’t always have the luxury of being able to blend in with everyone else – there will always be a situation where people will bombard us with questions and judgment due to our condition being brought up or noticed by others. I know I’ve had multiple instances where I’ve been questioned relentlessly, especially when I was younger, on why I was getting “special treatment” because I was eating something different than everyone else.
Shedding light on people affected by rare diseases and their experiences greatly benefits both the people with conditions themselves as well as everyone around them. Having the support of friends and family is so incredibly important to people like me, and learning to be more understanding and nonjudgmental is a great trait for anyone to have.
“It is important to bring awareness to lesser known diseases because those living with them face significant challenges in both the medical and social spheres,” Manock said. “Equally, as a result of said rarity, people are less likely to personally know someone with a certain rare disease.”
Aside from awareness, Rare Disease Day works towards achieving medical equity for people with rare conditions.
Medical care can be extremely expensive, especially for people struggling with a disease that isn’t well known. Some patients also might not have many options when it comes to treatment plans. For example, only two medications for my condition exist. I was not a responder to the first medication, and the second medication is only for people above the age of 18.
I was extremely lucky that I was put on the PKU diet as soon as my parents learned I had PKU, but others don’t have that same opportunity. People with rare conditions shouldn’t be worried about being able to afford treatments that they depend on to thrive, or in some cases, simply stay alive. Advocating for medical equity is critical to the wellness of people living with rare diseases and would help work to- wards finding cures and making diagnoses and treatment easier to get.
Rare Disease Day hosts different activities to help bring awareness.
One of the activities was the Global Chain of Lights, where people were asked to illumi- nate their homes or offices with blue, pink, purple, and green colored lights to show soli- darity for Rare Disease Day.
Other activities include conferences such as the Mosa Conference, an international an- nual conference where biomedical students present their research to scientists and doctors. This year’s Mosa Conference theme is rare diseases being brought to light in the scientific world, which will bring more attention to people struggling with rare conditions. Walks for awareness are also common, which both bring awareness and raise money for rare conditions.
Educating younger people about rare diseases is important to achieving awareness and equity. People in the younger generations will eventually be future doctors and lawmakers, and keeping them in the loop about the importance of rare disease awareness will benefit us in the future.
You don’t need to be a biomedical student or live near a rare disease walk to get involved, though. There are many different options available to students that want to support the rare disease community, one of which is participating in Rare Disease Day’s Global Chain of Lights.
“High schoolers can take part in Rare Disease Day by lighting up for rare using our home illuminations kit,” Manock said, “or encouraging institutions near them to light up for rare.”
Another option is doing what teens do best -using social media.
“Sharing this on social media would also be really helpful for spreading the word of Rare Disease Day,” Manock said. “We have also had some great success with bake sales this year, which you can check out on our socials.”
If you’re interested, check out Rare Disease Day’s website at www.rarediseaseday.org, or follow them on Instagram, @rarediseasedayofficial for ways to get involved with advocacy and showing support.
Rare Disease Day is extremely important to me and the other 300 million people world- wide living with a rare condition. We’re a strong community that will keep pushing for equity and awareness, all while supporting each other through everything.
NW-14. Personal Narrative
This is not an opinion piece. It is a first-person account of an event or series of events that constitute a single, profound experience. The focus of the piece is on narrative — telling the story of the experience. It can be written in present or past tense. The author should take extra efforts to describe the journey and explain its importance. Dialogue and internal dialogue are essential. Submit a PDF of the print page(s) on which the story was published or the URL to the story on an online news site.
JUDGING CRITERIA
- A first-person account depicting a personal experience
- Lead captures attention, arouses curiosity
- Topic relevant to interests and/or welfare of school or students
- Effectively combines basics of good news and feature writing
- Effectively organized with smooth transitions; carefully outlined
- Sentences, paragraphs of varied length; written clearly, concisely and vividly
- Proper diction/grammar
- Should have byline, which could include mug shot of writer