Rare Disease

Feed

Collections

Groups

Contributors

Partners

Join the Conversation on
Rare Disease

233K people

0 stories

10.8K posts

About Rare Disease

Explore Our Newsletters

Story

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

•

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. [...]

What's New in Rare Disease

All

Stories

Posts

Videos

Story

Advice for Adults Seeking a Rare Disease Diagnosis

Advice for Adults Seeking a Rare Disease Diagnosis

The Mighty Staff

•

Pinned •

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 [...]

Story

An Accidental Cerebral Cavernous Malformation Diagnosis

An Accidental Cerebral Cavernous Malformation Diagnosis

Mighty Partners

•

Pinned •

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. [...]

Story

Two kids hugging

Two kids hugging

Dr. Neena Nizar

•

Pinned

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 [...]

Story

Close up shot of woman eye looking at camera

Close up shot of woman eye looking at camera

•

Pinned

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 [...]

Post

Tierra Drollinger

•

·

@tierradrollinger23

AmplifiedMusculoskeletalPainSyndrome 7h

See full photo

💕

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

(edited)

6 reactions • 3 comments

Post

Tierra Drollinger

•

·

@tierradrollinger23

AmplifiedMusculoskeletalPainSyndrome 7h

See full photo

❤️❤️

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

(edited)

16 reactions • 4 comments

Post

Tierra Drollinger

•

·

@tierradrollinger23

AmplifiedMusculoskeletalPainSyndrome 7h

See full photo

🤣😂🤣

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

14 reactions • 3 comments

Post

•

·

MitochondrialDisease 1d

See full photo

Puzzled by Melanie R.

You held on-

to life’s puzzle pieces

when you didn’t know where to start.

One piece at a time,

could finally see-

through pain and the tears in your heart.

Each piece of His wonder,

the pieces of you-

Great Love in the darkest of skies.

No, you didn’t stumble,

brought healing from Father

when puzzled in pieces of life.

You rounded the corners,

when jagged and cornered;

they started to fit perfectly.

Each piece in it’s place,

God’s guidance and grace

with beauty of Psalm 17.

🧩❤️‍🩹✨💪🏻🙏🧬
#MitochondrialDisease #ChronicIllness #Gastroparesis #IrritableBowelSyndromeIBS #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #RheumatoidArthritis #RareDisease #IdiopathicIntracranialHypertension #ChronicPain #ComplexRegionalPainSyndrome

(edited)

3 reactions

Post

•

·

Spoonie Life Hacks 1d

See full photo

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

7 reactions • 3 comments

Post

Tierra Drollinger

•

·

@tierradrollinger23

AmplifiedMusculoskeletalPainSyndrome 1d

See full photo

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

17 reactions • 4 comments