Rare Disease

Story

•

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 [...]

1.3K

Save

Story

Close up shot of woman eye looking at camera

Glenda McCoy

•

Rare Disease

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

•

MightyTogether 1m

I’m new here!

Hi everyone, my name is Chris.
I’m living with a rare, severe neurological and autonomic multisystem disorder caused by a medication injury. My condition progressed dramatically over the past months.

I’m currently in Israel, and my treatment at Rambam (a leading neuro-immunology and rare disease center) officially starts on November 24/25.
This is my chance to stabilize and stop the progression.

I’m here because I need connection, support, and visibility — especially from others living with very rare diseases, dysautonomia, neuroimmune disorders, or complex chronic illness.

If you know patient communities, nonprofits, journalists or networks that support rare neurological cases, I would be grateful for any contact. Every connection matters right now.

#chronicillness #neurological
#MightyTogether #RareDisease #Dysautonomia

Be first

Save

Post

Mighty Leader

Group Leader

Thomas Ousterhout PhD

•

@thomas_of_copenhagen

Conquer Your Mind 13h

See full photo

You are still breathing. You still have time. Healing does not expire.

You might feel like you missed your chance.

Like you should have healed by now, or started earlier, or figured everything out already.

But as long as you are breathing, it is not too late.

Every breath you take is proof that you still have time.

Time to begin again.

Time to rebuild.

Time to change direction.

You are not too old.

You are not too broken.

You are not too far behind.

You are alive, which means you still have possibility.

You can take one small step today, even if it feels tiny.

That is how every new beginning starts.

Your past is not the final chapter.

This is your moment.

Begin again.

What is one small beginning you can make today? Comment it here.

Also, if you're going through a tough time right now, I want you to know that I post daily mental health videos about how to deal with painful thoughts. So if you or anyone you know is struggling and wants help, click on one of the links below or write me if you have any questions you want me to answer

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

#MentalHealth #MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether

17 reactions • 4 comments

Save

Post

Group Leader

52 Small Things Accountability Buddy

•

@52smallthingsaccountabilitybuddy

52 Small Things 18h

See full photo

What is a new tradition you want to incorporate into your life?

The great thing about traditions is this: We have the power to maintain the ones we like, but we also have the power to create fresh ones. And adopting new traditions can help us build our own sense of community, especially around what and who we value most.

A new tradition mighty staffer @sparklywartanks wants to incorporate in her life is having a family movie or game night at least once every month so she can see her siblings more regularly.

What about you?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

5 reactions • 3 comments

Save

Post

Mighty Leader

Group Leader

Thomas Ousterhout PhD

•

@thomas_of_copenhagen

Conquer Your Mind 1d

See full photo

The best mental health philosophy I heard today about choosing between what is easy and what is hard.

If you want to learn more about this, check out my video by clicking on one of the links below.

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

7 reactions • 3 comments

Save

Post

Carla

•

@carla1234

CheckInWithMe 1d

Keeping Our Community Safe

Hello Mighties!

As we head into the weekend, I want to share a quick reminder about staying safe, not just on The Mighty, but across all social media. Often scammers ramp up their efforts on weekends, hoping to slip under the radar.

First and most importantly:

If you have ever been scammed, please know it is not your fault. Manipulation is their skill set, and they are very good at it. Most people are never taught how to spot these tactics, which is exactly why I’m posting this today. We work diligently to keep scammers out, but sometimes they reach out to people before we catch them.

Here are a few signs to watch for:

Any message asking you to leave the platform is a huge red flag. Isolation is their goal, and WhatsApp is one of their most common suggestions.

They may also ask for your email address or phone number. Scammers prefer to operate in the shadows, where you lose the built-in protection of the moderation team.

If you receive a message on The Mighty that feels suspicious in any way, please report it, even if you’re not sure. To report a direct message, tap the shield icon in the top right corner and select “Alert Staff.”

We appreciate this community so much and want to keep it as safe, supportive, and scam-free as possible. Thank you for helping us do that.

Stay Mighty!

#CheckInWithMe #MightyTogether #MentalHealth #ChronicIllness #RareDisease #Disability

12 reactions • 3 comments

Save

Post

Group Leader

Take a Mighty Minute

•

@takeamightyminute

Mighty Minute 1d

See full photo

I feel confident when I...

For today’s #MightyMinute , we’re tuning into the moments, skills, and experiences that tap into and boost our inner confidence — whether it’s a self-care routine, a conversation with a trusted loved one or friend, sharing knowledge about a topic you’re passionate about, or something you’ve practiced and strengthened over time.

When do you feel the most confident?

💙 P.S. If this activity feels challenging, that’s totally OK — we feel that. Confidence isn’t always easy to access, and some days it takes a little more gentleness. We're sending you some extra love today! 💌

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #ObsessiveCompulsiveDisorder #EatingDisorders #Depression #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

25 reactions • 18 comments

Save

Post

Group Leader

52 Small Things Accountability Buddy

•

@52smallthingsaccountabilitybuddy

52 Small Things 1d

See full photo

Reflect on a time when you broke tradition. How did it feel?

Traditions are often celebrated or observed as they are passed down through generations or between family members, friends, or groups that share similar beliefs; but that doesn’t always mean they are "healthy."

Some traditions can be tied to toxic behaviors like childhood trauma or disorder eating and therefore can (and should!) be changed or challenged by those who once practiced them.

Mighty staffer @sparklywartanks broke tradition by deciding to no longer practice the religion she grew up with. She wanted to go on her own path and that made her feel liberated, especially in her healing journey.

3 reactions • 2 comments

Save

Post

Group Leader

Take a Mighty Minute

•

@takeamightyminute

Mighty Minute 2d

See full photo

An item, product, or tool I'm grateful for is...

Finding something that supports you — whether it's a distraction, a way to get things done, or a tool that supports mobility or accessibility — can be a lifesaver. It can also add an extra layer of comfort and confidence.

What's something you’ve found that you’re grateful for and that’s helped you manage your health in some way, shape, or form?

40 reactions • 24 comments

Save

Rare Disease

Related Conditions?

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

How My Daughter's Rare Disease Opened My Eyes

I’m new here!

You are still breathing. You still have time. Healing does not expire.

What is a new tradition you want to incorporate into your life?

The best mental health philosophy I heard today about choosing between what is easy and what is hard.

Keeping Our Community Safe

I feel confident when I...

Reflect on a time when you broke tradition. How did it feel?

An item, product, or tool I'm grateful for is...

Feed for Rare Disease

You are still breathing. You still have time. Healing does not expire.