Alopecia Areata

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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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Howdy!

I just wanted to introduce myself as I'm new to the group. My name is Crystal, I'm 43 years old, and I've got multiple autoimmune issues. Pernicious anemia was the first one at 22 years old, rheumatoid arthritis at 27, HS at 38, and alopecia areata at 40. I'm looking forward to being able to share my experiences with you and hopefully offer support for the bad days.

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Distract Me?

So much on the go at the moment that although it’s only Tuesday, I feel like it should be Thursday already! Part of that is that I had to a physical exam at the local MS Centre yesterday before I’m allowed to do any exercise, and now that I’m at 33ft pressure in the hyperbaric chamber, I’m starting to experience the unpleasant but necessary healing crisis.

I’ve written about my hyperthyroidism hair loss journey before, and one of the things that came with it was some sore spots on my scalp. One of which has become darker and more painful, so I’ve just fired off some photos to the dermatologist for her thoughts.

I know we often post things to distract each other, but today it’s me who could use the distracting!

So, I thought I’d subject myself to your mercy… ask me questions , tell me what you’d like me to write about, request a poem or a meme, I’ll do anything I’m capable of for your entertainment, and my own distraction 🤓

#DistractMe #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #PTSD #AlopeciaAreata #HypothyroidismUnderactiveThyroidDisease #Hyperthyroidism

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I Complete Me

Embracing my thyroid hair loss hat look 🤓. Thankful that it’s winter, and a special shout out to my Alopecia and cancer hair loss sisters. You do not have to be brave for me, or inspire me. I just want to say I see you and acknowledge how vulnerable hair loss makes us in a society which places extreme value in all of us with chronic illnesses being “whole again.”

For me, courage is saying I may never be whole again—and that’s okay 🖤

#ThriverThursday #AlopeciaAreata #PostchemotherapyAlopecia #Cancer #HairLoss #HypothyroidismUnderactiveThyroidDisease #ChronicIllness #MyCondition #ChronicFatigue #ChronicBeauty #Fibromyalgia #Spoonie #thisismetrying #iamwhole #wholeself

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Alopecia Areata

Happy Tuesday everyone! One of the many things I've dealt with since being diagnosed type 2, are boils. And man do those things suck!! I've gotten them all over. Little spots of hell after my happiness. A more recent turn of events, has led to these boils popping up on my scalp. I'm not sure which is worse, the ones on the body or the scalp. Both horrible no matter which way you look at it. As soon as they finally go away though, the circular area where the boil was, all the hair falls out. It VERY slowly grows back, but until it does, I wind up having bald spots all over my head. I used to have thick and healthy hair. It was the only thing I liked about myself. As soon as my hair starts to grow a little, boom, more boils. Sadly leads me to giving myself a buzz cut. And too because treating the boil is easier to do with very short hair. So many things have gone wrong since being diagnosed. But I never expected to keep losing the one thing that makes me feel pretty. Yesterday I found a scarf in one of my spare drawers and looked up how to wear it on my head. I normally wear wigs. But when my scalp breaks out or it's hot, this is so much cooler. Is there anyone out there that deals with this too??

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Why Will Smith Has it Wrong, Violence ≠ Advocacy

Like millions of people around the world, I gasped when Will Smith got on the stage during the Academy Awards and slapped Chris Rock across the face. This after Chris Rock made fun of Jada Pinkett Smith’s medical condition – #AlopeciaAreata .

As an advocate and mom of a child with diverse needs, I wish I could say this is surprising behaviour – from either man. Sadly, turning disabilities into punchlines is way too common.

But reacting with violence does not equal advocacy. Rather, it distracts from the real conversation – understanding and accepting a medical condition or disability.

Listen, I get it. There are times when my frustration level is high and I would love to scream and shout (but never hit). Yet I don’t.

Why? Because we have enough obstacles to overcome in having an honest and open dialogue about living with a medical condition or disability. Using violence just gives people another reason to tune out.

Yes, what Chris Rock said was out of line. But it’s nothing compared to what disabled individuals and their families hear each and every day.

I continue to hear the R word from educators, health professionals and random strangers. It’s even still learnpatientadvocacy.com/blog/2021/3/1/yes-your-advocacy-can....

Way too many of the conversations I have about my child are deficit based, instead of recognizing and building upon their strengths. Anyone who has attended an IEP meeting (individualized education plan) knows what I’m talking about.

And this deficit-based approach too often transcends to family, friends and even strangers.

I empathize with Jada Pinkett Smith living with a visible medical condition as well as having a husband who made Chris Rock’s comment more about him than allowing space for a conversation.

Lead, don’t be, the conversation

Imagine if he hadn’t jumped on stage and used violence, but rather used his star power to issue a statement the following day, taking the opportunity to educate people about alopecia. He could’ve explained that 1 in every 500 to 1,000 people in the US or nearly 2% of the general population are affected by alopecia at some point in their lifetime.

He could’ve shone a light on the condition, breaking down the stigma and showing the beauty and grace of his wife. Imagine how that would have lifted people up who are living with the condition, showing they aren’t alone in their struggles.

Heck, in his acceptance speech or media interviews, he could have educated people on alopecia. He’s in a privileged position where people listen to what he has to say.

But instead, he went for a quick hit, swore, and made it about him. Making matters worse, less than an hour later, he gets handed an award and has standing ovation.

For those of us fighting in the learnpatientadvocacy.com/books/how-to-make-patient-and-famil..., I could never imagine hitting someone, swearing at them, then getting accolades. Nope. I’d likely get arrested and slapped with a restraining order.

Be the example

Each and every time I advocate for my child, I try to learnpatientadvocacy.com/blog/2022/1/3/why-kindness-never-go... and use storytelling to bring issues to light. I know any perceived bullying on my end will add yet another obstacle to getting support.

Sure, in the moment I may want to scream. But rarely does this result in any positive action.

We need to look for opportunities to raise awareness, educate and break down barriers. Sometimes these appear in the moment and others emerge overtime.

Instead of giving Chris Rock or Will Smith any more attention on this horrible incident, I ask you – how are you shining the light on what matters to you?

For me, I will continue writing, speaking and advocating for not only my child, but all autistic kids and their families. I will do so with dignity, kindness and love. And when I do get hit with hate, which happens too often, I will not drop to their level as my child deserves better.

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Just Need to Vent

I Just Need to Vent ATM

•I Often Feel People with Multiple Chronic Illnesses Have No Place or Voice in the Chronic Illness Community.

•Words Matter the Constant Use of Chronic Illness vs Chronic Illnesses Really Upsets me on Days that I Struggle.

•I’m Freaking Exhausted with Having Multiple Chronic Illnesses. I Feel like a Single Parent with Quintuplets.

•I Get one Chronic Illness Back to Baseline However the Others Get Triggered and I’m Dealing with More Flare Ups.

•The Constant Flare Ups Really Trigger My Depression.

•I’m Tired of being in Pain.

•I’m Tired of Missing Training/Workshops.

•I’m Tired of Feeling Nauseous.

•I’m Tired of Medical Bills.

•I’m Tired of Shitty Health Insurance.

•I’m Tired of Fatigue.

•I’m Tired of Dealing with Vitamin Deficiencies.

• I’m Tired of Constantly Sleeping.

•I’m Tired of Chronic Hives.

•I’ve Tired of Swelling.

•I’m Tired of Figuring Out Which Chronic Illness is Causing Which Symptom.

•I’m Tired of Hashimotos, Fibromyalgia, Asthma, Alopecia, Chronic Urticaria and Angioedema.

•Today I’m also Tired of Crying.

#ChronicPain #Fibromyalgia #HypothyroidismUnderactiveThyroidDisease #Asthma #AutoimmuneUrticaria #HereditaryAngioedema #AlopeciaAreata #atopicdermatitis #ChronicIllness #RareDisease

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