Tom Corron noticed that his breathing was becoming more difficult. He was suffering from respiratory infections that lingered for a long time, and it was getting harder for him to climb stairs.
He visited his doctor, who advised him in 2005 that his lung capacity was at 42 percent, that he had lung damage, and that he would need a lung transplant in five years. He was tested and diagnosed with Alpha-1. He began augmentation therapy right away, and still doesn’t need a transplant.
However, “Most physical tasks are very difficult for me,” he says. “I get out of breath very easy. I use supplemental oxygen at night, when I fly or at higher altitude.”
When he first learned that he had Alpha-1, he knew next to nothing about the condition. Since his diagnosis, Corron has taken the time to learn about Alpha-1, has been on a mission to educate other Alphas, and is helping them improve the way they are living with the condition.
He started an Alpha-1 support group in Fort Wayne, Indiana, helped set up another one in Peoria, IL. and restarted one more in Chicago. In 2009, he joined the Board of Directors of the Alpha-1 Association, which merged in 2014 with the Alpha-1 Foundation.
On Feb. 29, Corron will make a presentation, describing what it is like to live with Alpha-1 – and the support that is available for Alphas – during a Rare Disease Day education event in Fort Wayne.
“I want to make a difference so that other newly diagnosed Alphas don’t have the same experience I did,” Corron says. “I feel that it is important to raise awareness not only of Alpha-1 but also of the resources that are available to people through the Alpha-1 Foundation.”
Corron and other speakers at the Fort Wayne event will join millions of rare-disease patients and their families around the world in sharing their stories. They will promote awareness of the challenges, hopes and needs of people living with uncommon illnesses.
In Fort Wayne, Mayor Tom Henry will announce a proclamation declaring Rare Disease Day 2016 in the city. Other speakers at the Feb. 29 event will include Robert Sandhaus, MD, clinical director of the Alpha-1 Foundation, who will describe the multiple symptoms of people with Alpha-1, how to diagnose the condition, and how to treat people who have Alpha-1.
The National Organization for Rare Disorders (NORD) is the official sponsor of Rare Disease Day in the United States. NORD’s sister organization, EURORDIS (The European Organization for Rare Disorders), organizes the official international campaign. More than 80 countries participated in Rare Disease Day 2015.
“The Rare Disease Day 2016 theme, ‘Patient Voice,’ recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and caretakers,” says a statement on the Rare Disease Day website, rarediseaseday.org.
At the Fort Wayne event, other rare diseases will also be discussed, including amyloidosis, a condition that – similar to Alpha-1 – is the result of misfolded proteins that build up in the organs and disrupt their normal function.
Jennifer Brink was diagnosed with amyloidosis at age 18. She is now 52.
“I’ve been watching my relatives die of this disease, and I’ve been waiting three decades now” for a cure, says Brink, program director, respiratory care at Ivy Tech Community College Northeast in Fort Wayne.
Brink, who will give a patient’s perspective on her own disease at the Fort Wayne event, would like to see more research dollars dedicated to finding a cure for amyloidosis. She also wants the U.S. Food and Drug Administration to update its rules and regulations so that it will stop requiring people with amyloidosis to be in progressively worse health before they can enter clinical trials.
NORD and EURORDIS are encouraging people like Brink to speak out about their struggles so that the wider community can understand them and help.
“The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases,’’ says the statement on the Rare Disease Day website. “People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.”
The wider community can also benefit from serving people with rare diseases, according to Michael Mirro, MD, medical director of the Parkview Mirro Center for Research and Innovation, where the Rare Disease Day event in Fort Wayne will take place.
“My message to the health system to support this is that these are patients who are underserved,” says Mirro, who helped to organize the Fort Wayne event. “They have a rare disease so that the resources to manage them and to help them are frequently lacking in different places in the United States. This will be a good starting point to shine a light on rare diseases.”
Carla Ladig is an AlphaNet coordinator for Louisiana and surrounding southern states. She was diagnosed with Alpha-1 at the Parkview Regional Medical Center in Fort Wayne more than two years ago, after she was admitted with spontaneous pneumothorax (an abnormal accumulation of air in the space between the lungs and the chest cavity.)
While Ladig was in the hospital, a nurse asked her several questions about her breathing history, and recommended that she be tested for Alpha-1.
Soon after her diagnosis, Ladig began receiving augmentation therapy. Now, she does not wonder about why she was suffering from bronchitis four to six months out of each year. Plus, she is not getting sick anymore.
“I think it’s really important to build awareness in the public,” says Ladig, who will staff an Alpha-1 awareness booth at the Fort Wayne event. “For me, the most important thing is to build awareness with the medical community. They could be making this difference for their other patients as well.”
What: Rare Disease Day 2016 event
Where: Parkview Mirro Center for Research and Innovation, 10622 Parkview Plaza Drive, Fort Wayne, IN 46845
When: The event will take place across two sessions on Feb. 29, 2016. The morning session will be from 11:00 a.m. to 1 p.m., and the evening session will be from 5:15 p.m. to 8:20 p.m.
No registration is needed for the morning session. However, registration for the evening session will be accepted until Feb. 26, 2016. To register, log onto www.parkview.com/CME.
For more information, call Cathy Ballou at 260-266-1450.