Alpha-1 Antitrypsin Deficiency

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Alpha-1 Antitrypsin Deficiency
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What’s a question you’re sick of being asked about your A1AT symptoms?

“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

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The relationship we have with our health conditions can change over time. What’s your current “relationship status” with A1AT right now? If you don’t see one that fits, add your own status below!

Choose one
2 days left
🤷‍♀️ What relationship?
🥊 We can’t stop fighting
🌻 We’re getting to know each other
😬 It’s complicated
🥰 We have more good days than bad ones
😍 Totally in love
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What’s the best change you’ve ever made for your A1AT?

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

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How do you relieve stress?

Balancing self-care and daily responsibilities while living with A1AT can be challenging, especially when you're experiencing stress. How do you relieve stress as it relates to your condition? Let's share and help one another in the comments below. 💌

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

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What does your self-care look like?

A1AT can vary in severity from person to person. Not knowing what to expect — especially when it comes to something as important as one’s health — can be hard to deal with.

How do you ensure you are taking care of your mental and emotional health too?

Whether it’s relieving stress through meditation or yoga, distracting yourself with hobbies or activities you enjoy, spending quality time with loved ones, or connecting with a mental health professional, share your self-care routine below. ⬇️

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

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One thing I wish others knew about A1AT is…

One of the everyday challenges of living with a rare disease like A1AT is explaining the realities of the condition to others — your doctor, family, friends, or even strangers.

What is something you wish others knew? What are you tired of explaining?

Share with us in the comments below. ⬇️

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

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What’s your go-to strategy for managing your A1AT symptoms?

Chronic health conditions like A1AT are a lifelong commitment of sorts. And while there is no cure (for now!), there are usually go-to strategies we can put into practice to improve our quality of life.

What’s your #1 tip for symptom management these days?

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

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The symptoms and severity of A1AT can vary from person to person. Choose from our list of symptoms or share your own in the comments below.

Choose one
43 days left
Shortness of breath and/or wheezing
Chronic cough
Persistent fatigue and low energy
Frequent chest colds
Yellowing of the skin and eyes (jaundice)
Itchy skin
Swelling of the legs and/or abdomen
Panniculitis (hardened, painful skin patches)
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Does A1AT affect your lungs, liver, neither, or both?

A1AT can affect everyone differently, even within the same family. All people with A1AT deficiency are at increased risk for developing lung and liver disease, but some people won’t develop symptoms at all.

Are your (or your loved one’s) A1AT symptoms characterized by lung disease, liver disease, neither, or both? Share with us in the comments below.

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

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