Do You Belong to an In-Person Support Group?
Last updated: May 2023
When I was first diagnosed with Alpha-1, I was interested in joining a support group. Would there even be one in my area?
With Alpha-1 being a rare genetic disorder, would there be anyone else out there like me?
I found out there used to be a support group about an hour and a half from me, but the leader had moved away and no one had taken over the group. This got me thinking.
I would love to be a support group leader, but I didn't know enough about Alpha-1 to lead and support a group.
Establishing a support group for Alpha-1 patients and others
In the meantime, I met my now-best friend, Deb. She lives about 40 miles away, and this was the first Alpha-1 patient near me that I had met.
We started meeting every week and held our own “support group.” Our time together is so valuable.
No one understands me as she does. We both knew that we wanted to start a support group and help others like our relationship helped each other.
We went to two other meetings before we started ours. It was so nice to see others who were like us and knew what we all go through.
Deb and I went to our first Alpha-1 National Conference in June 2011, and it was at that conference that we mentioned that we would like to become leaders and then got pointed in the right direction to have our first support group training that year.
After having some training, we had our first support group meeting. Even though we are a support group for Alpha-1 patients, we invite patients, caregivers, healthcare workers, and COPD patients.
Most everything we talk about has to do with COPD, from having Alpha-1, so it is helpful to them as well. With Alpha-1 being a liver disease that can cause both liver and lung problems, we do occasionally talk about the liver.
At the moment, only Deb and I are the only ones in our group who with both liver and lung affected.
Nurturing support and growth
We’ve had many meetings over the years with many topics, speakers, and even tours to some of the local donation plasma centers to see how one of the infusion medicines that Alpha-1 patients take is made with the start of plasma donation.
We have had some of the top Alpha-1 specialists speak, and most importantly, we have had some Alpha-1 support group members speak themselves, and share their journey with being diagnosed and living with Alpha-1.
We’ve had many losses over the years, which have been hard on us all, but we are thankful for all the memories that we have.
We really are like one big, happy family and love it when we meet another fellow Alpha-1 or someone with COPD and welcome them with open arms. In fact, that is part of our support group's name, which is Open Arms For Alpha-1.
These past three years have been really hard on us not being able to meet in person. However, we have been able to come together to Zoom and are very thankful for that, even though it just isn’t the same.
We all need that personal face-to-face connection. We never realized how important our meetings were for our mental health until we couldn't do that anymore.
I am so happy to say that this May will be our last Zoom meeting, and starting in July, we will have our first in-person meeting in over three years, and I’m so thankful for that.
I know there are some Better Breather COPD groups out there. Do you belong to an in-person group? What are all of your thoughts on this?
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