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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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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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AmplifiedMusculoskeletalPainSyndrome 20h

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Little miss Rosie's bday is on the 15th! Look at that big grin!

I got her 3 new toys she will Love and a new treat to try!

She will be turning 5! 😱
We got her when she was 3 a few months from 4. She had previously been bred over and over. She had been kept in a tiny cage. We got to introduce her to what being a dog really is like and now her whole body shakes when she wags her tail. She spins when she is extra happy and she has quickly become my little shadow trailing me everywhere. I wouldn't have it any other way! 💕❤️💕❤️💕❤️

Happy 1.5 years with us little one!!! I am SO glad we were led to each other!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AnkylosingSpondylitis #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #Insomnia #JuvenileRheumatoidArthritis #Lymphedema #MentalHealth #MemoryLoss #MightyPets #MightyTogether #Migraine #PosturalOrthostaticTachycardiaSyndrome #PTSD #Psoriasis #PsoriaticArthritis #plantarfasciitis #PanicAttack #PanicAttacks #musclespasms #MultipleAutoimmuneSyndrome #RareDisease #RheumatoidArthritis #Upallnight #SuicidalThoughts

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Tierra Drollinger

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@tierradrollinger23

AmplifiedMusculoskeletalPainSyndrome 21h

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A great reminder for myself to chase after only happy things.

If I haven't felt happy in a bit it helps a Lot to plan something I love to do in the next few days. That way I can rest up and save any energy for the True Important Things!
In a world where daily life can be a true struggle with so many health struggles and trials, the good things in life are more important than Ever!

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

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Amberley Levine

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@deadstar

CommonVariableImmuneDeficiency 1d

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Here’s a quick update on what I’ve got going on currently…

#CommonVariableImmuneDeficiency #RareDisease #ChronicIllness #Spoonie

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52 Small Things Accountability Buddy

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@52smallthingsaccountabilitybuddy

52 Small Things 1d

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Share your top 3 cleaning hacks.

Who doesn’t love a good hack?

Whether it’s a tool you’ve bought to make the process more accessible, a method you’ve learned that makes the process quicker and easier, or a routine or schedule that makes cleaning gentler on your health symptoms, share what your top three cleaning hacks are in the comments below! :⬇️

Mighty staffer @xokat's favorite hack is very simple: Never move to another room in the house without taking something with you. Headed to bed? Be sure to grab the pair of slippers by the couch. Leaving the bathroom? Take your cup to the kitchen sink. It really helps her to curb the clutter and mess throughout the day!

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