Cycling America to support Alpha-1 research efforts
In May of 2015, I left San Francisco, Calif., for Jacksonville, Fla., to raise awareness and funds for Alpha-1 Antitrypsin Deficiency. Alpha-1 is a genetic disorder affecting the lungs and liver which has no cure at this time.
After reaching Pueblo, Colo., in July, I took a leave of absence from my fundraising effort and headed home to Springville. I was able to raise $900 during my first segment (with a final goal of $1,500). My experience was too much of a positive life experience not to include my wife. So, I spent the rest of the summer and fall preparing Linda, mentally and physically, to join me for the final phase of the ride. We started this preparation with a four-day trip to Gunnison from Springville last October. In your travels around the south end of Utah County, you may have seen two cyclists training with loaded bicycles. That’s us!
So, you might be asking, what is Alpha-1 and what are the symptoms? Many individuals with Alpha-1 do not know they are living with it until tested. Affected individuals can experience serious lung disease as adults or liver disease at any age.
More specifically, the most common lung symptoms of Alpha-1 are: shortness of breath, wheezing, chronic cough and sputum (phlegm) production and recurring chest colds. Liver symptoms related to the disorder are: eyes and skin turning yellow (jaundice), swelling of the abdomen, vomiting blood or passing blood in the stool. The good news is that testing is available via your family physician. Early diagnosis can help an Alpha (individual living with the disease), consider different lifestyles, professions or other personal decisions that could maintain or improve their health. We all want to live our lives as completely as possible.
You can learn more from the Alpha-1 Foundation at www.alpha-1.org.
My extended family in Maryland lives with Alpha-1, including two youngsters 3 and 5 years old born with this genetic deficiency.They both have a full life ahead of them but will need careful management of their condition. There is a growing nationwide community as new diagnoses are made.
As an avid cyclist with more than 20 years of riding experience, I have done fundraising rides for multiple sclerosis as well as commuted to work, done day- touring in Idaho, Arizona and California, and enjoyed a week- long tour of Southern Utah’s national parks. A cycling highlight was touring with my wife in Provence, France. I have occasionally peddled with the Boat Dock Bandits cycling club in Utah County. My cross- country tour is my first but will not be my last.
Reflecting on my tour of America, I am grateful to celebrate retirement, health, faith, family and the love of cycling. At the same time, looking beyond self, I have reflected on how I might give back to the world community by asking myself, “What greater purpose can I combine with this epic adventure?” Alpha-1 came to mind and the rest is history.
If you feel you might be suffering with chronic respiratory and liver issues, please see your family physician to test for Alpha-1.
Linda Brigance and Robert Brigance Jr.