r By Robert Brigand Jr.rOn June 24, my wife Linda, and I rode our bicycles into Jacksonville, Fla., completing our 3,435-mile, self-supported, cross-country bicycle tour for Alpha-1 research. Part one of this tour started last summer when I left San Francisco, Calif., in May, ending in Pueblo, Colo., in July. Part two began in Pueblo on April 28 and ended in Jacksonville.
Alpha-1 Antitrypsin Deficiency is a genetic disorder affecting the lungs and liver. There is no known cure at this time. Many individuals may have this disorder and do not know it. Our tour was to raise awareness and research funds.rDuring our cross-country tour of America, we raised $1,760 in donations, exceeding our goal of $1,500. We are grateful for being supported by family, friends and acquaintances. Individual fundraising efforts do count. Together with others, good things will happen and goals can be met.
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.
Many individuals with Alpha-1 do not know they are living with it until getting a simple blood test. Affected individuals can experience serious lung disease as adults or liver disease at any age. The structure of the lung is very delicate. White blood cells are always present in the lungs; they remove dust, fight infections and perform other valuable functions. However, the substances released by white blood cells can damage the tiny air sacs in the lungs when the protection provided by alpha1-antitrypsin is less than normal.
Over many years, the tiny air sacs often break down in people who have Alpha-1, resulting in emphysema. The lungs work less efficiently if this happens and breathing becomes difficult. Medical science has not yet found a way to reverse this problem.
Alpha1-antitrypsin is made in the liver. This causes a mild strain on the liver, which may or may not cause noticeable health problems. People with Alpha-1 may develop liver problems either just after birth or later in middle age.rIndividual testing is available via your family physician. Early diagnosis can help an Alpha (individual diagnosed and living with the disease) consider different lifestyles, professions and/or other personal decisions to maintain or improve their health. We all want to live our lives as completely as possible. You can check out the Salt Lake City Alpha-1 Center at www.alpha1center.com for blood testing information. You can learn more from the Alpha-1 Foundation at www.alpha-1.org.rOur extended family in Maryland lives with Alpha-1. These family members include Brooke, soon to be a 3-year-old, and her brother, Owen, soon to be 5 years old. They were born with this genetic deficiency. Grandma and both parents tested positive for this genetic deficiency. We took time to visit with them on our way home to Utah. They are both energetic and full of life. They will need careful yearly management of their condition. There is a growing nationwide community as new Alpha-1 diagnoses are made.
As we reflect on our tour of America, we are grateful for the opportunity to celebrate our retirement, health, faith, family and love of cycling. At the same time, looking beyond ourselves, we hope our education/awareness bicycle campaign and fundraising will impact the continuing research efforts to find a cure for Alpha-1.
If you feel you might be suffering with chronic respiratory and liver issues, see your family physician to test for Alpha-1.
