Rare Disease

Join the Conversation on
Rare Disease
232K people
0 stories
11.1K posts
About Rare Disease
Explore Our Newsletters
What's New in Rare Disease
See full photo

When was the last time you felt proud of yourself?

Merriam-Webster defines “pride” as “confidence and satisfaction in oneself, or pleasure that comes from some relationship, association, or achievement.”

But if you’re anything like Mighty staffer @sav_bach, the second you achieve something, you’re already moving on, focused on your next goal. It can be difficult to celebrate your successes and accomplishments (especially if you don’t feel worthy of them), so we want to give you space to feel proud of yourself today.

Humble brags in 3… 2… 1…

💙 P.S. As always on The Mighty, we view success a little differently than the outside world. Brush your teeth today? Success! Followed up with a doctor? Way to go! Not all wins are traditional ones, but they are nevertheless important.

#CheerMeOn #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #Parenting #Autism #Cancer #Caregiving #MightyMinute

138 reactions 38 comments
See full photo

How do you explain A1AT to others?

Whether you’re explaining the condition to a friend, filling in a new health care provider, or sharing information with relatives, there are many instances where you may be the A1AT “expert” in the room.

How do you describe or explain A1AT to others? Do you share different things with different people? Tell us in the comments below.

#RareDisease #LiverDisease #LungDisease #Alpha1AntitrypsinDeficiency #Caregiving #ChronicIllness #ChronicPain

4 reactions
See full photo

Dear future self…

Ever done therapy homework? This exercise is for you!

We’re often encouraged to reflect on our past lives and childhood experiences because it can help us retroactively process trauma. And sometimes, depending on what we’ve been through, we’re asked what we would say to a younger version of ourselves as a way to connect with our inner child and/or reparent ourselves.

But it can be challenging (yet nevertheless important!) to think about our future selves, too. You choose the age, you choose the timeframe, you choose the words. Share your letters below!

#CheckInWithMe #ChronicPain #ChronicIllness #MentalHealth #Anxiety #Depression #Childhoodtrauma #MightyPoets #PTSD #Caregiving #Grief #RareDisease #Disability

145 reactions 39 comments
See full photo

What’s something you want to forgive yourself for?

Forgiving others? It can be done.
Forgiving ourselves? Depending on what you’re going through, this might be a little trickier (but nevertheless important).

If you fall into the latter category, today’s prompt is for you. Granting forgiveness toward ourselves is just as important as understanding and coming to terms with our past actions, behaviors, or habits in order to heal.

Mighty staffer @sparklywartanks wants to forgive herself for how she spoke to herself all the years she grappled with perfectionism. She wants to be more gentle with how she interacts with herself and how she manages rejection and setbacks in her life.

What’s something you want to forgive yourself for?

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

152 reactions 48 comments

Denying Medicare Care Hurts Everyone

Part 1 of 2 In April 2023, we launched a campaign targeting my United Healthcare Medicare (Dis)Advantage Overlords. The goal was to get them to actually pay for my infusion to treat Complex Regional Pain Syndrome and Small Fiber Neuropathy. These infusions keep me from being bedbound. I spent two years locked in a bed. I’m not going to do that again.

For the last five years, I’ve struggled to cover the full cost of my infusions and multiple medications, on top of my AARP Medicare Advantage Walgreens United Healthcare Health Insurance premiums, copays, and coinsurance. Like many, my rent went up last year by $400 all at once. The money had to come from somewhere, and the solution became rationing my infusions.

Organizations helped me to create and share our videos, and a petition. Covering the cost to keep me around. After one or two days, United Healthcare reached out to me. Within a week I had a very excited service coordinator telling me that my infusion was approved! The prior authorization approved an office visit and one hour of an infusion. The doctor’s office was still working on approval for the other three hours of infusion, along with the common medication and fluids needed. My thought process was that I could wait for July to have the infusion. I’ve tried to stay ahead of things, and I tell myself that I can hang in there.

Just weeks away from infusion, and I am suffering. I wanted to make it longer, but it was getting tough. I called to find out about moving up the infusion. I’m told that my doctor’s office can’t get United Healthcare to approve things like normal saline to administer the infusion or even standard vital sign monitoring. They had been trying since we got the last prior authorization.

That means filing another appeal, a formal letter trying to ask United Healthcare employees, with little to no understanding of what we are talking about, permission to get care. My providers have become experts in the rare neuropathic and genetic ailments that have caused me to have cancer twice. They have learned and studied things that they did not learn in med school, where they were told that rare diseases existed, but that’s about it. Now I have to beg people who sit in front of computers, knowing nothing about the medical reasons behind the medicine. They get to approve or deny the life-saving treatments that my providers say I need. I have no choice in any of this.

It’s a horrible thing to have to beg to be worthy of life. As someone with CPTSD, it’s really damn hard. I’ve fought my entire life to have a reason to live. The entirety of my childhood is the equivalent of a novel written by VC Andrews or Margaret Atwood. There’s even a potential chapter by Stephen King. I’ve caught myself in vacant stares into space questioning why my life matters.

Now I have to go back to the insurance company with another appeal to get them to cover everything needed for the infusion and for the correct date. I wrote to my senators, Hassan and Shaheen. I asked them to write a letter on my behalf requesting for this to be reviewed. I was also hoping that there would be a way to fix this permanently so that I don’t have to go through so much fighting. The senators did get more attention, and suddenly I had all these phone calls because they don’t like hearing from United States senators. Things started moving, and it looked like everything would be approved.

Well, that appeal did get approved, but not for the right date. They approved the date the request was filed, not the date of the infusion. How can they approve a treatment to put me under sedation for four hours, and also have me lucid and able to talk with an insurance person on the same day? The new prior authorization had everything that was needed fully approved, so I figured that they just had to fix the date. It seems so simple, right? Guess again.I spent the next couple of weeks trying to get in touch with the same people I had successfully dealt with before. I get voicemail after voicemail, and no one calls me back. But they did process the claim. They didn’t pay the doctor the right rate and denied the vital sign monitoring code as “not substantiate service.” Are you kidding me?! They paid a bit over $200, leaving me with approximately $400 to pay.

I have to message everyone again. I have to say it all over again and beg all over again. It’s a simple mistake. All the insurance has to do is change the damn date! I’m told I need to go through the “process” again. I’m even chastised and accused of not being “willing” to go through “the process.” What the heck have I been doing?! We started in April to get coverage for my July infusion. Now it’s September, and I’m still fighting for my doctor to be paid correctly and for charges not to fall on me.

Take away the infusion and I d

See full photo

What's your relationship with exercise?

Ah, exercise. For some, it is a valued part of their everyday life, a time to connect with others in group sports or to be with your own thoughts on a solo morning stroll. For others, it is a chore (oftentimes because of symptoms).

Exercise is an important component of A1AT treatment and maintenance to improve emotional health or increase lung endurance. It also looks different for everyone, depending on your ability and preference. Do you maintain a consistent exercise routine? What exercises do you most enjoy?

If you are no longer able to participate in exercises like you used to, we see you. Whatever your current relationship is to exercise, we’d love to hear from you.

Comment below, or don’t, no sweat (hehe exercise pun 😉).

#ChronicPain #ChronicIllness #RareDisease #LiverDisease #LungDisease #Alpha1AntitrypsinDeficiency #Caregiving

10 reactions 4 comments
See full photo

What has your health taught you about forgiveness?

As a health community, much of our lived experience is, in some way (or all the ways!), impacted by the conditions we ourselves or someone we care about manages on a daily basis.

Our bodies, minds, and emotions influence many facets of our lives, from our daily routines to how we interact with ourselves and those around us. Forgiveness can also play a role as we navigate the ins and outs of those often challenging and sometimes unpredictable or inconsistent conditions.

Mighty staffer @sparklywartanks health taught her that it’s OK to forgive herself for the unhelpful habits she’s developed growing up. She learned it’s also OK to speak up for herself now and change what she needs to in order to live a life that’s better for her.

What has your health taught you about forgiveness?

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

37 reactions 10 comments