Rare Disease

Living with a health condition—or multiple—can be complex and difficult to articulate, especially when words don’t seem to fully capture what it's like to experience certain symptoms on any given day. The nature of a condition (or how multiple conditions interact) and the way symptoms fluctuate, shift, or change can make explaining it feel like writing a dissertation. If that sounds familiar, you’re not alone—we get it! 🙋

What symptom do you find most challenging to explain? What strategies have you used to help others understand what you're experiencing? What do you wish was more widely understood to make it easier to communicate what you’re going through?

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

Depending on what we care most about, there are a plethora of ways we can each make a difference in the lives of others.

The charities, causes, and nonprofits we are passionate about can greatly bring awareness (and possibly funds) to those that may need help the most.

Mighty staffer @sparklywartanks is passionate about and has been a volunteer for NAMI-NYC for almost 6 years and it's been great for her recovery.

What about you?

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

Happy Monday, Mighty Warriors! 🌟

A new week can bring up a lot of emotions, and it’s OK to feel and express them. We’d like to check in and see how everyone’s mental health is today.

On a scale of 1 gold medal to 5 gold medals, how would you rate yours?

1 🎖️: Not doing well today.

2 🎖️🎖️: Eh. Not great — I could be better.

3 🎖️🎖️🎖️: I’m OK, I guess. Just making it through the day the best I can.

4 🎖️🎖️🎖️🎖️: My mental health is good. Feeling stable for the most part.

5 🎖️🎖️🎖️🎖️🎖️: I’m feeling great today!

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

It’s a new self-care challenge, Mighties, and this week we’re tapping into what you all do best: helping others!

Whether you’re a caregiver, volunteer, cheerleader for an online friend, or a helping hand to a family member, there are many ways we can assist the people around us. Helping others can be extremely rewarding not only for those involved, but our actions and intentional time can make an impact on society too. We are most powerful when we work together, right?

Mighty staffer @sparklywartanks loves to volunteer her time to share her mental health story as well as be creative with those around her.

How do you like to help?

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

Happy Friday! 🌻

Let’s take a #MightyMinute to reflect on our daily habits today, Mighties. 💡

The relationships we have—with ourselves, our environment, and those around us—are important. Being aware of our regular behaviors and routines not only helps us understand ourselves better, but also reveals what’s working, what we’d like to change, and which new habits we’re open to trying.

So, what habit are you currently working on—or hoping to build—this year?

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

Having a dedicated place you can go to reflect and sort through your thoughts can be super helpful, especially in those moments when you’re learning something new (exciting!) or gaining a different perspective or insight (scary!).

Where do you go when you need time to yourself to pause, regroup, and think?

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

When our sons were diagnosed with Duchenne muscular dystrophy, we felt like our world had collapsed. First our oldest, then—just when we thought lightning couldn’t strike twice—our youngest was diagnosed too.

We were scared. We were grieving. And we didn’t know where to start.

But one thing became clear quickly: if we wanted a better future for our boys—and other families like ours—we couldn’t stay quiet.

This year, my husband and I flew to Washington, D.C. to speak directly with lawmakers. We asked for continued funding for research. We pushed for policies that protect families with medically complex children. We carried not just our sons’ stories, but the weight of every family walking this road with us.

We documented the experience in a short video—not to promote ourselves, but to show what rare disease advocacy really looks like when it comes from the heart. We hope it helps others feel less alone, and maybe even inspired to share their own story too.

youtu.be/P2BRFHa4ngw

We’ve also started sharing more about our journey on YouTube, in hopes of reaching other families navigating this life. If this resonates with you, we’d love to have you join us.

Because none of us should have to do this alone.