Rare Disease

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Looking for a human that can design software for chronic patients. #showmejeanie

Let’s create this together!!!
It will help rare disease 🦠 patients globally!!!
Tytytyty!!! ☮️💗🤗💫

I love you!!!! So grateful thankful and need your brains!!! 🤗😘


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


Harmony Within: A Chronic Journey of Self-Love

In shadows cast by illness' might,
A spirit strong, resilient light.
Through trials faced with grace so true,
Self-love blooms, a healing cue.

Each day a battle, yet you stand,
A warrior with strength at hand.
Embrace your worth, like stars above,
Chronic journey, self-love's sweet glove.

In pain's embrace, find strength within,k
A tapestry of courage spun.
Your body's fight, a symphony,
Chronic notes in self-love's key.

Let whispers of compassion rise,
Echoing through the lows and highs.
For in acceptance, beauty thrives,
A self-love dance, where healing vibes.
#ChronicIllness #MentalHealth #Selfcare #RareDisease

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Share a sunrise, sunset, and horizon.

Hey you, we’re really proud of you for signing into The Mighty today!

To cap the week off, let’s do a little reflection and future-thinking. In the comments below, share the following:

🌅 Sunrise: Something positive or hopeful that happened over the past week.
🌆 Sunset: Something hard you went through or a change/transition/challenge you faced.
🌄 Horizon: Something you’re looking forward to in the coming days!

Love to you, friends. 💖

#MightyMinute #MentalHealth #Anxiety #Depression #ChronicPain #CheerMeOn #ChronicIllness #CheckInWithMe #RareDisease #Disability #Caregiving #Grief #Autism

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What are some ways you could simplify your living space?

Whether it’s finding a better system to store your food, taking unused clothes or shoes to be donated, or readjusting your furniture so you can move around your home more comfortably; different actions can be taken to simplify your living space — especially if you find you want to make some changes but don’t exactly know where to start.

What would simplify your living space and make it more comfortable for you?

#52SmallThings #MentalHealth #selfcare #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #CheckInWithMe #Caregiving #Autism #ADHD

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Where do you find joy in life?

Happy throwback Thursday, to happier times, when I was still able-bodied! I was in my early twenties & this was at the park. I had given birth to two girls before getting sick. Well, before being diagnosed I should say! I’ve been sick most of my young life. It just wasn’t until later on that it became more readily apparent. I used to love the outdoors & grew up near a lake. I was always very adventurous & outdoorsy growing up. It was my refuge. Now I’ve been entirely cut off & rarely if ever venture out. I stay isolated in my dark bedroom with little to no stimulation. My only access to the outside world is an iPhone. Ever since getting it a couple years ago my hands became deformed from arthritis. I have swan neck deformaties in my right hand & dupuytren’s contracture in the left. My elbows stay permanently bent & I have ankylosis of the shoulders. I have visited many orthopedic surgeons & upper extremities specialists to no avail. I have lost so much range of motion & mobility from chronic widespread inflammation. I’ve been trying to seek an official diagnosis for Sarcoidosis on top of my other rare disease. It’s very disheartening. #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Spoonie #CommonVariableImmuneDeficiency #Arthritis #ankylosis #Anxiety #Depression #Agoraphobia #BipolarDisorder #MentalHealth

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Let thoughts be

The most painful thoughts occur in our heads when we resist them by wishing them away and thinking they should not be there. What you should actually do is just let them be. For example, let's say you are trying to go to sleep and you live in the city. You hear traffic and it is bothering you. When you wish for it to be gone and long for silence, doesn't that drive you mad? Sound is innocent; it's your interpretation of that sound that turns it into noise. So, when you let it be and stop fighting it, that's when you discover peace. The same goes for the traffic of thought activity in your mind. It's just sound. Don't let your mind turn it into noise and cover up your peace. Do these instructions help? Post in the comments how you're doing with this to let me know!

~ Thanks to all. Thanks for all. ~

Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

#MentalHealth #MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether

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