Discussions

KNOW YOUR LUNGS:  November is Alpha Awareness Month. Have you heard of Alpha-1 Antitrypsin Deficiency (Alpha-1)? Alpha-1 is an inherited genetic condition that can affect the lungs and liver. Many people have never heard of it, yet early diagnosis can make an important difference in the lives of those affected by this disorder.

💙 Alpha-1 occurs when the body doesn’t produce enough of a protective protein called alpha-1 antitrypsin (AAT). This protein helps protect lung tissue from inflammation and damage. 🫁 How is it connected to bronchiectasis?

• Alpha-1 can contribute to lung damage.

• Some people with Alpha-1 develop bronchiectasis.

• Damaged airways can make it harder to clear mucus, increasing the risk of recurring respiratory infections.

🔎 Common symptoms may include:

•            Shortness of breath

•            Chronic cough

•            Excess mucus or sputum

•            Recurrent respiratory infections

•            Wheezing and fatigue

🧬 Why does testing matter?  Alpha-1 can go undiagnosed for years because its symptoms often resemble asthma, COPD, or other respiratory conditions. Current guidelines recommend that people with COPD and unexplained bronchiectasis be evaluated for Alpha-1.

💡 What can you do?

✔️ Ask your pulmonologist whether Alpha-1 testing is appropriate.

✔️ Know your family history.

✔️ Avoid smoking and secondhand smoke.

✔️ Stay current with recommended vaccinations.

✔️ Work with your pulmonary team on an individualized airway-clearance plan.

💙 AWARENESS MATTERS! Not every person with bronchiectasis has Alpha-1, and not everyone with Alpha-1 develops bronchiectasis. But understanding the connection may help identify an underlying cause and guide treatment.

Alpha-1 Foundation – Contact Information  : Phone: 1-877-228-7321   Alternative phone: 305-567-9888

Website:  https://alpha1.org/alpha-1-awareness-month/

Helpful Resources-the Foundation can help with:

•            Patient education and educational materials.

•            Alpha-1 testing information.

•            Patient support groups.

•            Finding physicians who specialize in Alpha-1.

•            Research and clinical trial information.

Have you or someone you know been tested for Alpha-1? Let’s start the conversation. 

I have been diagnosed with bronchiolectasis, not bronchiectasis. I can find almost nothing about this condition.  Are there  other members with this condition?  I'd like to start a discussion.  Thanks

Hi y'all,

I am new to this group. I was diagnosed with Bronchiectasis in 2012. I have frequent exacerbations, many due to Achromobacter which was found in 2022. In spite of multiple rounds of antibiotics which it is supposedly susceptible to, I have not been able to get rid of it.

I do not know anyone else with this disease and have a hard time knowing if how I feel physically is normal, or if it is getting worse. Although my pulmonologists specialize in Bronchiectasis, they have not been great about explaining how my symptoms compare to others and what to expect in the future.

I have a pulmonologist who has a stellar reputation in my area, but bedside manner is much to be desired. I went to him recently after a two day hospital stay with pneumonia. In the “15”minutes he saw me. Standing as if hurry up. He had not  looked at any of the results from the hospital. (Which I made sure were sent to him) he ducked  out briefly to have a look. Didn’t have much to say. When I asked if the pneumonia was  gone. He said “probably”. Without even checking my lungs. Ushered me out to the front desk to schedule  a few procedures (lung function and xray.) I know people will suggest find another doctor. Well good luck with that. Impossible. In fairness I know these doctors are overwhelmed and it seems the shortage of doctors puts a heavy load on them. And I’m sure he’s a very qualified doctor. But everyone dealing with this needs to feel heard and relevant. Fortunately I have another pulmonologist in Florida. (Snow bird) who is the exact opposite. Takes time, reviews results  That’s my rant!!  Sorry ☹️