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21 Tattoos That Give Us Hope for Rare Disease, with images of tattoos in the background

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Rare Disease

21 Tattoos That Give Us Hope for Rare Disease

If you’re part of the rare disease community, you share a space with people who represent over 7,000 rare diseases and counting. Some conditions are more visible, others not so much. To help raise awareness and create visibility, groups often design ribbons or symbols, or select a color to help represent their condition and cause. [...]

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Advice for Adults Seeking a Rare Disease Diagnosis

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Rare Disease

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Advice for Adults Seeking a Rare Disease Diagnosis

NewThe journey to receiving a rare disease diagnosis later in life, also known as a late-onset diagnosis, can be a bumpy one (and that’s putting it nicely). To help you navigate this road, we asked our rare community to share their advice for others who are similarly searching for answers. Here’s some advice that’s helped [...]

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An Accidental Cerebral Cavernous Malformation Diagnosis

Mighty Partners

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Rare Disease

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An Accidental Cerebral Cavernous Malformation Diagnosis

NewI discovered I had cerebral cavernous malformation (CCM) by chance. Earlier in the pandemic, I was in medical school and running a lot to relieve stress. When I returned home from my runs, I noticed my vision became bright, as if someone was shining a light into my eyes, which worried my mom and me. [...]

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Dr. Neena Nizar

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Rare Disease

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When Your Child With a Rare Disease Doesn’t Feel Brave

Have you ever done something that you knew was the right thing to do, but you were scared to do it? Or maybe you did something that looked hard, but you decided to try it. That is courage in action and you probably felt very good about what you did. And you should! Courage shows [...]

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Close up shot of woman eye looking at camera

Glenda McCoy

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Rare Disease

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How My Daughter's Rare Disease Opened My Eyes

When my daughter was first (mis)diagnosed with a rare disease in 2013, not only was I utterly devastated by the news that she had a progressive disease, but I was also shocked beyond reason by the realization that such a disease even existed in the first place. That moment was reality-altering. In fact, I remember very little from that day, except [...]

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Spoonie Life Hacks 10h

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Do you have any tips or tricks for handling faintness following medical procedures?

Slip a fan in your backpack or purse and cool off in the waiting room until you get your sea legs again. Take as long as you need ❤️

#CheckInWithMe #ChronicIllness #RareDisease #ChronicPain #Cancer #CheerMeOn #Lupus #Migraine #Fibromyalgia

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Tierra Drollinger

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@tierradrollinger23

AmplifiedMusculoskeletalPainSyndrome 11h

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You cannot pour from an empty cup.

Take care of YOU ❤️💕

#AmplifiedMusculoskeletalPainSyndrome #AnkylosingSpondylitis #Asthma #Anxiety #Arthritis #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Headache #JuvenileRheumatoidArthritis #Lupus #Lymphedema #MentalHealth #MemoryLoss #MightyTogether #Migraine #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #PanicAttack #PanicAttacks #plantarfasciitis #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #sciatica #ShinSplints

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Tierra Drollinger

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@tierradrollinger23

Tea Time-Me Time 12h

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My FAVORITE tea out of All the tea I own(which admittedly is probably 500+)

What can I say? Lol I LOVE tea!

This is a decaffeinated green tea so I like to sip it before bedtime 🌙 😴

#AmplifiedMusculoskeletalPainSyndrome #Anxiety #Asthma #AnkylosingSpondylitis #Arthritis #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Insomnia #Lupus #Lymphedema #MentalHealth #MemoryLoss #MightyTogether #Migraine #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PsoriaticArthritis #PanicAttack #PanicAttacks #plantarfasciitis #JuvenileRheumatoidArthritis #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #ShinSplints #sciatica

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Take a Mighty Minute

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@takeamightyminute

Mighty Minute 13h

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Share the rose, bud, and thorn from your week.

Hey, how was your week? Let’s reflect!

In the comments, share with us:

🌹 A rose = A highlight, success, small win, or something positive that happened.

🥀 A thorn = A challenge you experienced or something you can use more support with.

🌱 A bud = New ideas that have blossomed or something you are looking forward to knowing more about or experiencing.

Take kind care of yourselves this weekend, Mighties.

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

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52 Small Things Accountability Buddy

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@52smallthingsaccountabilitybuddy

52 Small Things 16h

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Where do you go when you need to think or reflect?

When it comes time to sit with yourself and think through whatever is on your mind — both the good and bad — it can be helpful to find a place that helps you center yourself and process your thoughts.

Whether it’s your bedroom, a walk (or roll!) in a nearby park, your local cafe, or a therapist’s office, where do you go when you need a moment to pause and reflect?

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