Alpha-1 Antitrypsin Deficiency

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Alpha-1 Antitrypsin Deficiency
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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

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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

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How does A1AT affect your sleep?

A1AT can affect your sleep in a variety of ways, including difficulty breathing while lying flat and fatigue or weakness during the day.

What’s been your experience? Share with us in the comments below (and drop a tip or two if you have them!). Wishing you good rest soon!

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

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What are your needs right now?

It’s a loaded question, we know — but what do you need right now? Here’s a way to break it down so it feels a little more approachable:

🧠 What do you need mentally? (examples: less on your to-do list, a break)

💛 What do you need emotionally? (examples: forgiveness, patience, understanding, to be loved)

🫁 What do you need physically? (examples: rest, energy, a low-pain day, a diagnosis)

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

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What has surprised you most about living with A1AT?

Life with A1AT can come with a lot of challenges, but not all of them are expected. Has there been one particular aspect that’s surprised you the most (good or bad)?

Whatever they may be, share your surprises with us in the comments below.

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

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Select the emoji that matches your experience best:

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🧼 Cleaning or other household chores
🚴‍♀️ Exercise
💝 Mental and emotional health
🤝 Maintaining relationships
💼 Work or school
😴 Sleeping
🍳 Cooking and eating
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How does A1AT affect your eating?

A1AT-caused liver disease can lead to decreased appetite, unusual weight loss, and nausea or vomiting, to name a few. How does A1AT affect your eating? Share in the comments below (and share a tip or two if you have them!)

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

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What’s one piece of advice you want to share with others about managing life with A1AT?

We’d love to hear what you've learned or what has helped you manage, treat, or accept your A1AT diagnosis.

Share your hacks, tips, or advice for living with A1AT in the comments below. ⬇️

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

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