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21 Tattoos That Give Us Hope for Rare Disease, with images of tattoos in the background
21 Tattoos That Give Us Hope for Rare Disease, with images of tattoos in the background
ADS
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Rare Disease
4y

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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mcoye1993
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Rare Disease
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I Won’t Let My CIDP Diagnosis Take Away My Dreams

Think about your senior year of high school. Does prom come to mind? At the start of my senior year, 17-year-old me highly anticipated prom night. When I went dress shopping, I had my best friend with me — along with my physical and occupational therapists — because putting on dresses was my “therapy” that [...]
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The Mighty Staff
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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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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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Two kids hugging
Two kids hugging
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
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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52 Small Things Accountability Buddy
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@52smallthingsaccountabilitybuddy
52 Small Things 1d
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Share a poem that's impacted you. Why has it had such a profound effect?

We’ve talked a lot this week about writing our own poetry (we loved reading your words, you brave and creative souls!), but what about reading poetry? That practice can be just as powerful as the creation.

To end our challenge, let’s share the poems that have changed our lives, worldviews, perspectives, and emotions.

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression

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Tierra Drollinger
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@tierradrollinger23
AmplifiedMusculoskeletalPainSyndrome 1d
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Found this at the dollar store and I figured it fit my nutty life lol my own inside jokes make this life easier to handle.

Too bad the 'our' isn't a 'my' but I guess it fits with my pup Rosie and I.
Though I am more messy in health than she is 😅

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

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Take a Mighty Minute
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@takeamightyminute
Mighty Minute 2d
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Today, I will not...

Sometimes prioritizing ourselves, our self-care, and our health means choosing not to engage, participate, entertain, encourage, or take part in certain things, and that’s completely OK! Our well-being is important, and we have the right to decide what feels best for us. 🌻

What will you be holding off or not doing today?

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth

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Tierra Drollinger
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@tierradrollinger23
AmplifiedMusculoskeletalPainSyndrome 3d

It takes me days after an appointment to be rested up especially with my chronic fatigue.

After a few months of appointments I quickly reach the point where I am so sick of them and I stop wanting to even answer my phone let alone go to appointments and go through the hoops of anything and everything medical. A short lifetime of constant appointments at least weekly since I was 13 and now being 29 I Have to plan rewards after my appointments or I don't even want to go in the waiting rooms. Now that I am older I purposely take weeks off of appointments though I prefer months off not that I ever get a full month off *sigh*

Anyone else get sick of appointments too?

If I have an appointment with a terrible doctor( even a lifetime of Dr appointments and I have only had 10 good ones from cardiologists to pain doctors to primary care physicians) my quota reaches my limit super fast. My psychosis was started and keeps happening with anything to do with bad doctors.

It is based on feeling I have no control in my life and rarely ever have. Being unable to live on my own, have a job, or even drive has significantly worsened my psychosis.

Though I have found that doing artistic things helps me feel more in control and makes me happy yo be who I am.

Oh how little health people know about the lives we live!

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

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Tierra Drollinger
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@tierradrollinger23
AmplifiedMusculoskeletalPainSyndrome 3d
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I accidentally woke her up while I was trying to get a picture of her sleeping face 😴

So close dang it! Lol next time! 😉

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

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