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Alpha-1 Antitrypsin Deficiency - just been diagnosed
We recently moved to Florida so I've had to find new doctors. I went to a new pulmonary doctor who was very thorough. After reviewing my pulmonary function tests and asking me questions about my family history etc. He suspected that I have something called Alpha 1. They did a blood test and called me ten days later and told me that I the blood work came back indicating that I have Alpha-1. They gave me a brochure with various web sites that I've gone on in an attempt to learn more about the disease. Is there a discussion group here about Alpha-1? I would really like to be able to be in a discussion group with folks who have been diagnosed with Alpha-1 to learn more about it. Thanks!
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Are you located in France?
Alpha1 can start to affect you at varying rates.
I’d ask him how quickly you can start receiving Prolastin-C infusions.
If you can’t afford it ($130K/yr) contact these three places that offer financial assistance:
NORD
The Assistance Fund
Accessia.
Do you live in France?
I assume that you have had a PFT. There are other variables on that test that affect the WAY you breathe with the lung volume you have.
If you are in the US find an Alpha 1 specialist in the state in which you live. Someone who will view your PFT in its entirety.
Alpha.1.org has a list but they won’t let me post a link because I am a new member
I am MZ with Bronchiectasis, MAC, and APBA. My sister, MZ, has COPD, my brother, MZ, has emphysema. My ID, pulmonologist, and immunologist have all shown no interest in following up on my alpha 1 status. I think it would be great to find out what my AaT level is - does the Alpha 1.org have a resource for testing?
Can you please tell me French doctor name that helped you with bronco?
My mother passed away in 2018 after being diagnosed with Alpha-1 Antitrypsin Deficiency. Shortly thereafter, I consulted with my primary care physician at Mayo Clinic and underwent genetic testing, which confirmed that I also carry the condition. From the outset, I made a conscious decision to live my life as fully and normally as possible, without allowing the diagnosis to define my future.
I am committed to maintaining a healthy lifestyle, and as a result, I feel better than ever. My bloodwork is consistently excellent, my weight is well-managed, and my overall well-being is strong. I remain determined not to let this diagnosis hinder my ability to lead a fulfilling and meaningful life.
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