Alpha-1 Antitrypsin Deficiency

Join the Conversation on
Alpha-1 Antitrypsin Deficiency
344 people
0 stories
123 posts
About Alpha-1 Antitrypsin Deficiency
Explore Our Newsletters
What's New in Alpha-1 Antitrypsin Deficiency
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

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

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

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