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✨Memoir Spotlight—“Old Before My Time” by Hayley Okines✨

The extraordinary life of Britain’s 100-year-old teenager. Hayley Okines is like no other 13-year-old schoolgirl. Born with the rare genetic condition progeria, she ages eight times faster than the average person. In medical terms her body is like that of a 100-year-old woman. Yet she faces her condition with immense courage and a refreshing lack of self-pity. In “Old Before My Time”, Hayley and her mum Kerry reflect on her unusual life. Share Hayley's excitement as she travels the world meeting her pop heroes Kylie, Girls Aloud and Justin Bieber and her sadness as she loses her best friend to the disease at the age of 11. Now as she passes the age of 13 ― the average life expectancy for a child with progeria ― Hayley talks frankly about her hopes for the future and her pioneering drug trials in America which could unlock the secrets of aging for everyone...

#themightyreaders #Progeria

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Books With #RareDisease Representation

Many health challenges don’t get enough representation in literature. I think that definitely needs to change. Finding more common conditions in books is hard enough, but when you have a rare disease, it can be even harder to find yourself represented in a book.

That’s why I decided to compile a list of some YA books that contain characters with rare diseases. I hope some people can find a book to relate to on this list!

”Cursed” by Karol Ruth Silverstein Erica “Ricky” Bloom’s life has taken a turn for the worse. As if dealing with high school, her sister’s transition to college, and her parents’ divorce wasn’t enough, Ricky is diagnosed with #JuvenileIdiopathicArthritis . Ricky uses profanity to cope with her #ChronicPain , until her coping mechanisms are foiled by a boy with a diagnosis of#AcuteLymphoblasticLeukemia in his past and a snooty, but well-meaning, teacher. It turns out that not everyone is as they seem.

2.”100 Days” by Nicole McInnes

Agnes is not exactly like every other teenage girl. She likes pretty dresses, sewing, and music. She has a best friend. But Agnes has a disease that makes her appear several times older than her chronological age— #Progeria . With the help of her friend and an unexpected ally, Agnes’s last 100 days are her living her best life. But will the three friends be able to accomplish what counts before time runs out?

3.”How We Roll” by Natasha Friend

Quinn’s life changed when she was diagnosed with #AlopeciaAreata , which is not easy for anyone, let alone a high-schooler. A humiliating experience causes Quinn and her family to move. Quinn attempts to make friends, which proves difficult. Quinn meets Nick, who has #LimbAmputation because of a car accident. Can both Quinn and Nick learn to trust and let each other in before they build their walls too high?

4.”Midnight Sun” by Trish Cook

Seventeen-year-old Katie Price has a rare disease #XerodermaPigmentosu m that makes exposure to even the smallest amount of sunlight deadly. Confined to her house during the day, her company is limited to her widowed father and her best (okay, only) friend. It isn't until after nightfall that Katie's world opens up, when she takes her guitar to the local train station and plays for the people coming and going. Charlie Reed is a former all-star athlete at a crossroads in his life—and the boy Katie has secretly admired from afar for years. When he happens upon her playing guitar one night, fate intervenes and the two embark on a star-crossed romance.

5.”Everything, Everything” by Nicola Yoon

Madeline Whittier has #SevereCombinedImmunodeficiencySCID , which means she can’t leave her house. But one day, she sees a mysterious boy named Olly. And Olly makes her want everything—including things she can’t have. Like love.

Art of Feeling” by Laura Tims

Samantha Herring has been in constant pain ever since the car accident that injured her leg and killed her mother. After pushing her friends away, Sam has receded into a fog of depression until she meets Eliot, a carefree, impulsive loner, who is unable to feel any pain at all. At first, Sam is jealous. She would give anything to not feel the pain she’s felt for the past year. But the more she learns about Eliot’s medical condition #CongenitalInsensitivityToPain the more she begins to realize Elliot’s self-destructive tendencies. In fact, Eliot doesn’t seem to care about anything—except Sam. And as they grow closer, they begin to confront Sam’s painful memories of the accident, memories that hold a startling truth about what really happened that day.

Happy reading! 📚💖

#themightyreaders #RareDisease

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Four Ways Documentaries Help Your Mental Health

Documentaries. Documentaries are the answer for me when I need to distract and calm down — and I’m not talking about award-winning, cinematic masterpieces. I’m referring to the cheap, quickly done ones that you can find all over YouTube.

Say, one evening, you’re stressed and you feel your #Anxiety begin to rise like a boiling pot. Reach for a documentary.

You’ll learn a random factoid.

For those with #SocialAnxiety, mentioning the documentary and what you’ve learned is a nice way to keep a conversation going — just make sure they’re appropriate for conversation and easy to comment on. That excludes medical and true crime documentaries. The Toys That Made Us is fair game (people love nostalgia.).

They’re usually 40 – 60 minutes long, and not too fast-paced. Perfect for those feeling a manic episode coming on, and just long enough to help you take a breather. If that’s too long, watch it in chunks and go back to it when you need another moment to distract.

They might just help you readjust your perspective. Be honest with yourself; sometimes anxiety can come from something being blown out of proportion At least for me, I know that’s when mine will start to scream for attention. A simple embarrassment at work will turn into my anxiety yelling that I’m a failure and am an embarrassment. But, watching a young child deal with #Progeria, reminds me of how great it is to have, at least, my physical health. Perspective. It’s all about perspective.

There you go. Documentaries, guys, reach for the documentaries.

I’ll leave some links below to get you started. Some are as short as eight minutes.

The Dark Past of Sea Monkeys

Girl Awakes After 20 Years in a #Coma

How Rubber Bands are Made

The Amazing Art of Painting Restoration

Let me know which ones you liked! Are there any more that I should have added? Share in the comments above!