A1TA

There’s a lot to consider when deciding whether or not you want children, regardless of having a health condition or not. But living with a hereditary rare disease can certainly make considerations even more complicated.

If you feel comfortable sharing, we’d love to hear from you.

P.S. Family planning is a deeply personal topic. Wherever your life has led you, we honor and hold space for that path!

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

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

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

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

If you’re struggling to get through the day, we know how tough it can be to muster up some gratitude. But one thing we know to be true — you all appreciate each other on the daily!

Consider this post your space to say your “thanks” out loud. (And scroll through if you need a reminder that you are valued and seen.)

💌 We’ll go first: We’re thankful for this community because you are the reason we have the best jobs in the world. What an honor it is to be here and learn from you always!

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

A common scenario that many of us have faced is time in the hospital — be it for a day, a weekend, a week, or even multiple weeks at a time. So that got us thinking: What are your must-have items during a hospital stay?

Here are some ideas to get your brain movin’:

🧸 A special blanket or comfort item

🎧 Noise-canceling headphones

🪥 A toothbrush

🗂️ A binder of your medical records

👖 Your comfiest sweatpants

📱 A phone charger

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

Hey, what’s on your mind these days?

Perhaps you’re worried about finding a new doctor, or maybe a mysterious symptom has popped up out of nowhere. In the comments below, share what’s stressing you out right now (no matter how big or small).

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

After receiving an A1AT diagnosis or learning you are an A1AT carrier, it’s recommended you disclose this information with blood relatives and encourage them to get tested as well.

Whether you’re disclosing your A1AT diagnosis for the first time, seeking emotional support, or offering encouragement to another family member, conversations about A1AT can be complicated.

How do you and your family talk about the disease? If you feel comfortable, share with us in the comments below.

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

Today's a good day to cheer each other on 🙌. Share a milestone or win (big or small) that you've had recently with the group 🌟.

I'll go first!

I’ve finally been able to figure out how to control my gestational diabetes with diet and exercise, so no injections needed for me! 💃.

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

We know good doctors when we see them. Maybe it’s their communication style or something they did that went above and beyond. Perhaps it’s a genuine bedside manner or a doctor who always returns your calls the same day you make them (the dream!).

In your experience, how do you know if a doctor is a good fit for you?

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