Posts Tagged Support Groups

Nick Jones: 2011 COPD Community Champion!

April 2nd, 2012 | Author: Janina Kowalski

In November 2011, the COPD Foundation asked Read more…

Life-Changing Diagnosis

April 1st, 2011 | Author: Katelyn Turner

Tom Corron knows what it’s like to feel depressed after an Alpha-1 diagnosis. But instead of sitting back and doing nothing, he’s taken control of his life, and has created two different support groups in two different cities.

“It was devastating thinking about the things that I could no longer do, but then I realized that this is a life-changing diagnosis,” Corron says. “Realizing that what you have has no cure and only treatment [makes you think] ‘what does that mean?’ A pulmonologist told me at the time that I would probably need a double lung transplant in about 5 years, but I’m still a long way from a lung transplant.”

After his diagnosis in 2005, Corron received a phone call from AlphaNet coordinator Doug Turley who shared with Corron his life story.

“He told me he was diagnosed way too late, and went through a double-transplant, and now he works for AlphaNet. I was able to ask him all the questions I had, and he pointed me to the Alpha-1 Association and their education days, to get involved in the community,” Corron says.

Tom Corron

Corron attended some of these education days, meeting Peg Iverson, another Alpha whose mother had passed away from Alpha-1.

“At the time, I was living in Des Moines and she wanted to create a support group, so I helped her,” Corron says. “And when I moved to Fort Wayne last year, I decided to start a support group [of my own].”

In 2009, Corron was appointed to the Board of Directors of the Alpha-1 Association.

To start a support group, Corron suggests starting with putting together a mailing list and reaching out to your doctor, church and others in the community to help spread the word. He also asked industry partners to sponsor the meeting.

“We received very positive responses from people. They were so glad to finally meet someone else who was going through the same things they were,” Corron says. “The first meeting we shared who we are, why we’re doing it, and let them know about resources available. During the second meeting, he had an Alpha speak who had received a lung transplant and he talked about that…we also agreed to open up the meeting to individuals with COPD, caregivers and significant others.

Corron says that before his diagnosis, it took a number of years and doctors to figure out what he actually had.

“I finally had a name for what I was dealing with and it was a relief to have it figured out,” Corron says. “I had asthma as a kid and was always dealing with frequent exacerbations, but I didn’t know what they were. I felt like I was getting old too fast; I couldn’t walk or run anymore.”

After creating the Fort Wayne, IN support group, Corron has also begun one in Chicago, which will have its first meeting Saturday April 9, 2011 at Coram Specialty Infusion Services Office.

“I really enjoy the support group experience as a patient—learning how to take care of yourself and the education,” he says. “If you want to start your own support group, talk to the Alpha-1 Association and the staff there can help you contact other group leaders.”

The main message that Corron wants to get across is that Alphas and individuals with COPD should never feel alone.

“There are many people out there willing to help. As far as new people being diagnosed, they should get involved in education days—that’s where the information is, and the latest and greatest news of what’s happening,” he says. “You’ll get a lot of your questions answered and you will feel comfortable knowing that you have the right connection.”

The COPD Information Line: Here for You!

September 1st, 2010 | Author: Katelyn Turner

“It’s just really great, being able to talk to people – especially people newly diagnosed Read more…