Diagnosed With Alpha-1, Now What? (Part 2 of 3)
Editor's note: This is part 2 of a 3-part series. Check out part 1 and stay tuned for part 3!
When I was first diagnosed, I felt so lonely. Not that my family and friends weren’t there, but just lonely in a way that I knew no one else was going through the same things that I was. That quickly changed when I discovered some Facebook support groups for Alpha-1.
Find the support you need
Going through the same things
Through those groups, I met many Alpha sisters and brothers who were going through the same things that I was. They knew what it meant when I said that I was out of breath from walking from the kitchen to the bathroom, taking a shower, and trying to dress or put on my shoes. They got it.
I’ll never forget those first few Alphas who always had an answer to a question or were just there when I needed someone to listen. I have met many more hundreds of Alphas over the years but those first few I'll never forget even though some of them have passed.
My best friend
The next best thing that happened that year (2010) was that I met my best friend Deb Burwell through another friend. I was so excited to meet her and finally see another Alpha, someone who was going through the same things that I was. It was so comforting knowing that we just lived about 40 minutes from each other.
When we first met, we would get together once a week. It was like we had known each other forever. In our first meeting, we both had discussed that we would love to be support group leaders and do fundraisers to bring awareness for Alpha-1 patients - and that's exactly what we did. We had our first fundraiser in 2011 and this year we will be having our eleventh.
Started our nonprofit
In the meantime, we did some training, became support group leaders, and had our first meeting in 2012. With the help of an Alpha friend and family members, we officially started our nonprofit called Open Arms For Alpha in 2016.
There are some other great resources out there to find that support you might need. The COPD Foundation, here at COPD.net, and many others that you can find on the internet. The Alpha-1 Foundation was another one of those places to find support and also helped Deb and I get our support group started. If you go to their website you can click on the link to find a support group in your area. If you don't find one close enough, you might even consider starting one yourself, it has been very rewarding. I know it has been a big help for me and many others.
Please don't ever be afraid to reach out and ask questions. Most Alphas are so knowledgeable and you can learn so much from them. Just remember that there is no such thing as a stupid question.
In part 3 I will cover trying to stay healthy.