Juvenile Idiopathic Arthritis

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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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Increasing anxiety due to covid- do you feel the same?

The last couple of weeks I've found my anxiety is increasing and I think I know why. (Background: both myself and my bf are immune suppressed, he was shielding, and we've both had all the covid vaccines we can)

Here in the UK restrictions are being lifted more and more. For example for a couple of weeks now there is no legal requirement to self isolate. Yes that's no legal requirement to self isolate even if you test positive for covid 🤦‍♀️ And as of 1st April you won't be able to get free covid tests either. In fact I think the only people who can get free covid tests are those going into hospital and those who are vulnerable to covid and showing symptoms. It's completely crazy imo, but you know there's nothing I can do.

So the message I'm getting from the government is "go back to normal". This in itself increased my anxiety. Another layer to add to this is the messages I'm getting from work, social media and people in general is "let's do more, see more people, return to the office, etc." This is feeding my anxiety because my brain is going "it's not safe out there because covid and people are acting like covids over... to your fight, flight and freeze battle stations... ***PANIC***"

I really don't know what I can do to handle this anxiety because practically speaking there isn't anything more I can actually do. I already work from home and thankfully can continue to do so (the message to return to the office is from top level management. My team however are super understanding and supportive!). We already get food shopping delivered and clean it on arrival. I don't see anyone inside with one carefully considered exception: I sometimes have private trampoline sessions in a big hall with only the coach in a mask there, and they're irregular. My parents have a 2 week extra-precautions period prior to seeing me.

There is literally nothing else I can do to keep myself safe and ease my anxiety. I suppose all I can do is wait it out and wait for my brain to get used to the new restrictions or lack thereof.

Is anyone feeling similar?

#COVID19 #ChronicIllness #ChronicPain #Arthritis #AnkylosingSpondylitis #IrritableBowelSyndromeIBS #Migraine #RheumatoidArthritis #PsoriaticArthritis #JuvenileIdiopathicArthritis #ImmuneSystem #ImmuneDeficiency #Biologics

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Helpless #ChronicIllness #Disability #teenager

Today my mother brought me my toothbrush into my room because I, a 16 year-old, couldn't get to the bathroom (on my own). The pain from my JIA was so severe, that my legs felt like they burned and every step was one too much. I felt helpless. I cried while I looked to the bathroom, 3 metres away from me, but still unreachable.
My illness and disability always felt like a burden, like something to overcome, but today-... today felt like another level. I never felt THAT helpless, THAT dependent on others, and frankly, it was quite terrifying.
So I brushed my teeth over a bowl, my mother held for me and I felt ashamed. I felt so much shame, from being seen like that by my mother. Shame from needing her help with something as simple as brushing my teeth. I don't want her or anyone to think that I can't live my life on my own. I can and I will. Or at least that's what I thought, but today made me wonder if that's realistic. Today made me fall apart and left me with the question of what my future will look like.
#disabledteenager #helpless #future #ChronicPain #Pain #Shame #struggle #JuvenileIdiopathicArthritis #Arthritis #Family

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Update on stuff :)

Hello all! It has been a while. I hope everyone is doing alright.

I am in college now, in central NY. It has been quite an experience trying to navigate my health from a new place.

I just got a new diagnosis: Milroy's Disease. My ankles swelled up and originally I thought it was my juvenile idiopathic arthritis flaring. I called my doctor and she had me go on a double daily dose of naproxen to reduce the swelling. For some reason that didn't work, so she requested that we do a video call so she could see my ankles. She saw the swelling that was going on (more in my right ankle than my left) and she felt like something was off. She had me press on my ankle and see if I left a fingerprint and weirdly enough, it did. In the end, she said she was pretty sure it was lymphedema, but wanted to make sure.

She sent me to my college's health center for bloodwork and sent me to have an ultrasound of ankles. Crazily enough, the hospital here told me over the phone that "They don't have the proper equipment for that." I was like, "It's just an ultrasound..." But the hospital apparently doesn't have equipment to do sonograms 😅 This concerns me, not gonna lie. I know this is a small town, but I assumed that any town in a developed state like NY would have ultrasound machines. I stand corrected. In the end, I had to shlep across town to go to an imaging center that thankfully DID have an ultrasound machine, and I got one done.

The scan showed that I have inflammation of the soft tissue (lymphedema) but no synovitis (arthritis inflammation). This was both reassuring and concerning. It's reassuring because that means that my Enbrel is still working and I am still in remission :)) but it concerning because I now have a whole new health condition. It makes me sadder that this condition doesn't have a medication or anything that can make my symptoms go away or put them in remission. I did get compression socks, which are helping with the swelling and some of the pain. It just frustrates me that whenever I make progress in one area, I seem to have something else crop up elsewhere. Why is my body so broken?!

Anyway, I'll stop complaining. I am doing quite well in school TG, and my other health issues are pretty well controlled. My GERD is flaring a bit (probably because of my food choices here), but my IBS is stable. I've been fatigued, but my doctor encouraged me to exercise when it comes upon me instead of taking a nap, and it's been helping for the most part.

I hope you all are well and would love to hear from you 😘 Sending love and hugs!

#Lymphedema #MilroysDisease #ChronicIllness #ChronicPain #MentalHealth #Depression #Anxiety #Disability #chronicmigraine #RheumatoidArthritis #JuvenileIdiopathicArthritis #JuvenileRheumatoidArthritis #Arthritis #Pain #Swelling #relief #College #collegehealth

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Hi there 👋🏼

For those of you that are new here, hi 👋🏼 I’m Lexi. I’m the group leader here at Caregivers Corner 💜

A little background about me…

Growing up I had Rheumatoid Arthritis. In kids it’s better known as Juvenile Idiopathic Arthritis. I was the person receiving care. My mom and I also lived with my grandparents. My grandfather had a laundry list of issues, but the most debilitating was that he was an incomplete quadriplegic. My grandmother was his caregiver.

Now lucky me grew out of the JIA 🍀 so I started helping my grandparents as soon as I was able. Toward the end of my grandpas life, my mom and I did a majority of the caregiving. I’ve lived this life, my whole life.

I have made it my mission to advocate for caregivers, because we often don’t get the recognition or attention we deserve.

This group is for you. Always feel free to reach out to me. I have given workshops for new caregivers, I have pointed people in directions for information I cannot provide. (Chances are if I don’t know, your local social worker does). I’m here for a helping hand and advice where I can.

Stay strong #Caregivers 💜

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