lung disease

Join the Conversation on
lung disease
423 people
0 stories
62 posts
Explore Our Newsletters
What's New in lung disease
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

True or False: I have trouble describing my experience with A1AT to others.

Whether you’re trying to explain A1AT’s impact on your quality of life or you’re sharing your experience with a particular symptom, finding the words to accurately capture A1AT can be hard — and there’s no shame in that.

What resources, questions, metaphors, or anecdotes have proven helpful to describe your condition?

Share your tips in the comments below.

#RareDisease #A1AT #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

1 reaction
Post
See full photo

Which area of your life does A1AT impact the most?

From performance at work and school to spending quality time with family and friends, we know A1AT can affect life in many different ways (both good and bad).

What area of your life has been most negatively impacted by A1AT? What area has been most positively impacted? Share with us in the comments below. ⬇️

#RareDisease #A1AT #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

1 reaction
Post
See full photo

What has your experience with treatment for A1AT been like?

Treatment types, medications, and lifestyle changes can vary from person to person. Some patients with alpha-1 find success with COPD therapies, pulmonary rehab, oxygen therapy, or weekly infusions.

What treatment experiences did you have that did not meet your expectations? In what ways, if any, have you been pleasantly surprised? Share in the comments below. ⬇️

#RareDisease #A1AT #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

Post
See full photo

If you are living with A1AT, what piece of advice do you wish you had received earlier?

If you are living with A1AT, what piece of advice do you wish you had received earlier? What is something you wish you had learned earlier about the condition?

Share in the comments below. ⬇️

#RareDisease #A1AT #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

1 reaction
Post
See full photo

What would improve your relationship with your doctor or therapist?

Your relationship with a doctor or therapist is an important one, but it can be really frustrating when you feel like you're not being listened to or your needs aren’t being met.

Is there anything your doctor or health care team could do to improve your experience or relationship?

Let us know in the comments below. ⬇️

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

1 reaction
Poll

Select all that apply
140 days left
Behavioral and lifestyle modifications
Medication therapy for lung problems
Surgical therapy for lung disease
Treatments for the complications of liver disease
Organ transplantation
Other
None
1 reaction
Post
See full photo

How has A1AT influenced your family planning?

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

Post
See full photo

What’s your A1AT pet peeve?

From people assuming what you can and can’t do, to changes in work and meal prep, living with chronic illness and/or rare disease can be a n n o y i n g.

Have something you want to get off your chest? Want to find solidarity in your own annoyances? Check out the comments section below.

#RareDisease #A1AT #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

Poll

Liver disease from A1AT can start as early as infancy, but most people who experience lung symptoms have symptom onset between ages 20-50. When did yours start?

Choose one
172 days left
👶 Early childhood (0-9)
🧒 Adolescence (10-19)
👨 Adult (20-50)
👵 Older adult (51+)
1 reaction
Post
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

5 reactions