Rare Disease

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I need someone to #CheckInWithMe because…

Our #CheckInWithMe program was inspired by the friendship between Mighty staffer @xokat and a fellow spoonie. It was born from the very simple idea that one of the most powerful things we can do for each other is check in without pretense. That can look like checking in when we know the other person is struggling or checking in when one of us conquers a fear or celebrates a success.

And even more importantly, #CheckInWithMe trains our minds to recognize the power in asking others for help — it means we’re better understanding our needs, realizing our boundaries, and being aware of when our physical or emotional batteries are running on low.

So today’s #MightyMinute is going to run a little differently. In the comments below, write about what you’re dealing with and after, reply to another Mighty who needs that check-in. We’d love to see the power of reciprocal support (which is something you all do so well!).

#MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #Autism #Caregiving #Grief #Cancer #Trauma

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If you're anything like me, you've had your fair share of tragedies and dark moments. This led to years of depression and eventually wanting to make my life. And when I look back, it's easy to blame these events, but all that does is remove the fact that I came through. No one gave me the strength to keep on fighting, I had it in me all along. I just didn't see it until I was in a situation where fighting was my only choice. Now that I've made it this far, I know that when further pain comes, having the strength to keep on going will only come from myself. If you're reading this and dealing with pain, I hope you know that you too can create the same internal strength to keep on going. You already have everything you need to overcome whatever obstacle you are facing right now. Is anyone having difficulty remembering how strong they are or how far they've come? What are some things you've done that prove that you are strong?

~ Thanks to all. Thanks for all. ~

Also, I'm so grateful for all of you and would love to get to know you all better outside of The Mighty, so if you're on Instagram, feel free to reach out at:


#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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Stripes & Stars of Rare Disease by Melanie R. #RareDisease #ChronicFatigue #MitochondrialDisease #IdiopathicIntracranialHypertension

Stripes & Stars of Rare Disease
By Melanie R.

Our faith as our anchor.
Our hope’s guiding light!

Amidst all the struggle,
we share in our plight.

Bringing awareness;
to comfort and guide.

To face rare disease
locked arms-

A journey set forth,
uneven terrain.

Traveling on suffering,
forged purpose in pain.

A chorus of voices
uniting in song-
ring out together,
but battles go on…

Our trials and triumphs,
resilience and strength,
brought us all here
on rare disease day!

So join us in chorus,
wear stripes to support-
our healing begins,
it starts in our heart.

For stripes shine like stars,
by stripes we are healed,
Restoral by scars
Our voices they hear.

Remember Rare Disease Day is February 29th, 2024!
We share in the suffering and the glory!
Stay strong and God bless you all in a mighty, mighty way!

#ChronicIllness #ChronicPain #IrritableBowelSyndromeIBS #ComplexRegionalPainSyndrome #AxonalNeuronalNeuropathies #InsideTheMighty #MightyPoets #MightyTogether #christiansonmighty

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TRUE or FALSE: It’s easier for me to advocate for others than for myself.

Our topic for this week’s self-care challenge is self-advocacy!

When talking about advocacy, we’re referring to the skills and understanding to know one’s needs and openly and effectively communicate those needs to others, whether that be for ourselves or on behalf of those around us.

How do you feel about self-advocacy? Do you find it easier to advocate for yourself or for others?

Share with us in the comments below. ⬇️

#MentalHealth #Anxiety #Depression #CheckInWithMe #ChronicPain #ChronicIllness #Autism #Caregiving #Trauma #Grief #Disability #RareDisease #52SmallThings #52SmallThings

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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

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