lung disease

Explaining a rare disease (or any other chronic condition) tends to be… challenging. And it can be especially tough when you’re not in a good headspace to explain right then and then. Enter: our new Mighty worksheet!

It’s great for:

💖 Sharing with a loved one who wants to know how to support you on high-symptom days.

🧠 Passing along to a friend who doesn’t really get how physical illness can affect one’s mental health.

🏥 Using in appointments with your health care team to capture your lived experience.

🖨️ Print, download, and share the worksheet here: themighty.com/topic/alpha-1-antitrypsin-deficiency/a-workshe...

#RareDisease #A1AT #ChronicIllness #Caregiving #LungDisease #LiverDisease #CheckInWithMe

Whether it’s something recent or in your past, we’re curious about a time when you handled something — a relationship, an opportunity, a boundary, a medical procedure, a loss — in a way that makes you feel proud of yourself.

Whatever it is, we want to cheer you on. Give yourself a well-deserved pat on the back below. ⬇️

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

What's a piece of advice about managing your health that has really stuck with you over the years? It could be something small or big, serious or lighthearted. It could be a tip about drinking more water throughout the day. It might be about finding time to practice self-care or focus on your mental health.

If you’re in a sharing mood, tell us in the comments below. And if you’re looking for some new words of wisdom, give the comments a thorough scroll!

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

It’s often not talked about how much chronic illnesses like A1AT can impact your mental and emotional well-being. We know how challenging it can be to balance your condition along with your other responsibilities, while also finding time to take care of your mental health. Having a rare disease can lead to feelings of isolation, depression, and anxiety as well.

But you don’t have to go through this alone. Maybe you’ve found a support group, or perhaps you’ve started taking medication or practicing mindfulness techniques. Whatever you do to support your mental health, share in the comments below. ⬇️

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

Take what you need, Mighty fam!

🔋 Energy

⏰ Time

💖 Support

💃 Fun

📱 Connection

😴 Rest

📣 Encouragement

☀️ Good weather

✌️ Peace

🧘 Pain-free moments

⚖️ Stability

🙌 Motivation

📚 Distraction

💪 Strength

🤞 Patience

🍀 Luck

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

“Why are you always so tired?”

“But you don’t look sick?”

“Have you tried yoga?”

“Did you pray about it?”

If you have a diagnosis like A1AT, there’s a pretty good possibility you’ve heard one of the above statements at least once in your life. While we’ve come a decent way as a society, we still have a long way to go in how we view and interact with chronic illness and rare disease patients.

Share those eye-rolling questions with us below. 👀

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

Patient-provider relationships are a two-way street, and sometimes there can be a skewed imbalance of conversation or effort from either party.

If your appointment leaves you feeling a little empty or confused, we’re curious what topics or questions you wish your doctors actually broached.

Sometimes you just want a medical professional to ask how you’re really doing, follow up on something you mentioned to them during your previous appointment, or start the conversation about a scary symptom or outcome.

If you feel comfortable sharing, add your questions or topics in the comments section below.

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

How’s it going today?

If you are feeling great, give us a 👍 in the comments. We love that for you!

If today is a rough one, reply below with a 👎. (We feel you!)

Not a fan of the thumbs? Comment below with any emoji that best reflects how you’re doing right now.

Ready, set, emoji!

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

Mighty fam, we’ve heard from so many of you about the relationship you have with your doctor and how important it is. For some of you, your doctor is the only one who “gets” it. For others, communicating with your doctor is a frustrating experience.

In your life with A1AT, share whether the above statement feels true or false to you in the comments below. (And if you feel up to it, tell us why!)

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

Living with A1AT can require a person to make a lot of changes — big ones, small ones, temporary ones, forever ones.

Some of those changes can be hard to swallow because they are ones we never thought we’d have to make (like leaving a job).

But sometimes the changes can be for the better. Maybe your health made you slow down so you can spend more time with your family, focus more on your mental health, or explore a new, more flexible career path.

Share your positive changes with us in the comments below.

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain