Living with Alpha‑1
Since Alpha‑1 is fairly rare, it often takes a while for it to be diagnosed. Finding out you have Alpha‑1 may bring up mixed feelings about what it all means and what to do next. But working with your healthcare team can help you learn to manage your condition. It’s important to exercise, eat healthy, get enough sleep, and follow the plan your healthcare team has recommended. It’s also important to have a community of support that includes family and friends.
Managing life with Alpha‑1
Watch Jim and Julie share what changes they’ve made in their lives since diagnosis.
Jim: I'm a nonsmoker, and actually I quit drinking 30 years ago, so I probably did the right thing a long time ago to probably help myself because of the impacts to the liver and to the lungs. I love to hike but I just take my time a little bit more, I take more rest. Before you know, I noticed I struggled but now at least I know I'm struggling, but I take a lot more rests along the way.
Julie: I still have trouble breathing when I walk upstairs or if I go for a walk with my husband and we have to go up maybe a little bit of an incline, and I have to actually stop and take some breaths. I have to be careful to limit physical exertion, but I’ve found some things that are Alpha-1 friendly. So, there are things that aren’t hard on my lungs like art and spending time with my family and taking a small walk.
Jim: Smoking's only going to accelerate it and so I would say don't smoke, don't drink. I'm working on exercising on a treadmill where I'm actually going for a period of time and, you know, before it was a lot of just walking outside. These are some of the things that I added to some of my exercise regimens since the diagnosis.
Julie: Lifestyle changes can make a big difference. I think if you don't smoke cigarettes or try to stay away from irritants you have a better shot with your lungs.
Jim: You might as well be as positive as possible. It's only going to help you, anyway, mentally and physically, you know, so, you know, get out there and stay positive.
Julie: The information online can be negative, but it’s important to be proactive and help yourself and find those resources. I find if I focus too much on Alpha-1 that I don’t give myself enough care or self-care, and that can be overwhelming. It’s been really important on this journey to have the support from my family and my friends. Without that support, I really don’t know where I would be.
Talking to your doctor about Alpha‑1
A doctor or healthcare provider will be able to advise you on next steps and put together a personalized care plan.
Here are questions to help with that conversation:
A resource for Alpha‑1
Even though Alpha‑1 is a rare disorder, support and information are available.
Alpha‑1 Foundation is a not-for-profit corporation that is dedicated to finding a cure.
Here are some other good places you can go for help:
The COPD Foundation helps improve the lives of people living with COPD and other lung diseases.
The American Lung Association is working to make the world a place that is free of lung disease.
The National Organization for Rare Disorders (NORD) is a source of support and information for those affected by rare diseases.