lung disease

If 1000 people with your same condition where in the same room as you , I bet you would be the only one with your perspective on life “

The man at our churches end of summer party responded to me in what felt like a half disgusted , and in another way half impressed form of bewilderment .

He is the type you can tell life had not handed a kind hand to .. and in process he has hardened with the pains he has had to endure
( kind of how the same water that softens a potatoe hardens an egg )

I smiled and said to him

“ Not exactly, I’ve had the opportunity to work along side and get to know many with conditions like mine ,
Or worse .. and the perspective on life with severe illness .. it’s kind of a mixed bag “

And he could just not wrap around his head around how im so happy .. but a 28 year old , with failing health .

I tried to explain how even though im lacking in the physical health department .. I I feel like I can have joy because God has blessed in so many ways .

With a chuckle and a smile he told me he was Jewish 😂❤️.

He could not wrap his head around how I see the world .

And I could not wrap my head around how he sees the world .

Maybe God knew I needed this conversation when it seemed like all I was doing today was marinating in the frustrations of my current situation .

I even came out to our Church cook out knowing I didn’t physically feel good enough to be there , and cursing out the constant drizzle of rain .

But as it rained , 2 rainbows formed

And through my conversation with this man . The rainbows just seemed to get brighter .

As I left the party , feeling a new perspective on how to face my current dilemmas .

I couldn’t help but say a silent prayer to God thanking him for the rain in my life .

So I know just how important rainbows are . 🌈

How has your health changed your perspective in a way others may not understand? #RareDisease #CommonVariableImmuneDeficiency #MastCellActivationDisorder #Epilepsy #LungDisease #MentalHealth #MixedConnectiveTissueDiseaseMCTD #Glaucoma #Gastroparesis #chronicmigraine

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

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

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

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

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

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

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