Help Make the World a Better Place with Your Rare Illness

looking at xray

In Eric Kristen’s film, Midnight Sun, Bella Thorne played a 17-year old talented student named Katie Price.  Katie is intelligent, funny, kind, and extremely good at singing. She even plays her guitar on some nights at the local train station.

Nothing about that made Katie particularly special. If you saw her with her guitar, you’d say she’s a very talented singer. But your might be wondering why she only plays the guitar at night.

The premise of the story is that Katie can’t go outside during the day. She’s not a vampire or some other mythical creature. Instead, she has one of the rarest health conditions in the world, xeroderma pigmentosum (XP). In simple terms, the sun is Katie’s arch-nemesis, and it can kill her.

To protect Katie, her parents decide to keep her inside the house. It has unique windows that keep the UV rays out. Even their car has unique windows, too. For many years, Katie’s father has been waiting for research regarding her daughter’s condition and, hopefully, a cure.

As he waits, Katie grows up and makes friends. Eventually, she falls in love with Charlie, a nice boy in the same school she goes to. The only catch is that she doesn’t physically go to school, and she can’t even go to her graduation ceremony.

One night, after spending a lovely date in the city, Katie and Charlie oversleep by the shore. The sun is almost up, so they hurriedly drive home. Unfortunately, the most terrible thing happens — Katie gets exposed to the morning sun.

Why is this so horrible? XP is a health condition described by an extreme sensitivity to ultraviolet rays. As a result, patients with XP quickly develop freckles, sun spots, and sunburn. But the worst of it is their heightened susceptibility to skin cancer.

In the story, Katie develops skin cancer, which quickly spreads to the rest of her body, including her brain. Unfortunately, science can’t save her until her dying breath because there isn’t enough research on XP.

Having a rare disease is frightening. There is hardly ever a cure or even treatment for patients to get. Not only that, but they can be victims of prejudice and bullying because not everyone understands it. However, this and other rare diseases do exist.

Silver Lining of Rare Diseases

scientist

Often, people with rare diseases are faced with hopelessness. Perhaps one of the worst things about having a rare disease is a low quality of life. Who would want to live like that?

Of course, no one wants that to happen to them. People with rare diseases often come through by living life the best way they can. Take, for example, the brave and beautiful Claire Wineland. She was a charming online celebrity who advocated for cystic fibrosis, a disease that targets the lungs and other organs of the body.

By advocating for the disease, people started to learn about cystic fibrosis and what it was like to live with a rare disease. She spoke about staying positive and strong despite being sick. She smiled, laughed, sang, and danced on camera. She had a substantial social media following that helped spread information and hope.

But like all good things, her journey came to an end when she was 21 years old. Yet, her legacy remained and grew even brighter. People who knew of her learned to fall in love with life.

Claire showed people how to be grateful and how to make the most out of everything. She showed people that happiness was a choice and not a given circumstance. And most importantly, she showed people the value of not ever giving up.

This is just one way a person with a rare health condition can make the world a better place. Another way to do that is to participate in research about rare diseases and help the medical world find treatment and cure.

Studies about rare diseases are critical because they also give researchers information that is relevant to other conditions. These studies are essential because they help people live better lives. They also help prevent numerous diseases, if not cure them.

These types of research can help uncover the origins and causes of rare diseases and hopefully end with critical scientific discoveries. The results can also help us understand common related disorders. Finally, it can help inspire people to find solutions to problems.

Having a rare disease is not a death sentence. It might be scary, but no one is ever truly alone. So if you or anyone you know and care about has a rare disease, don’t lose hope. Every day, science is doing something to uncover the secrets to many medical health conditions. One day, a cure will be studied and discovered for every disease there is.

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