What is alpha-1 antitrypsin deficiency (A1AD)? Author Samantha Bowick has written articles revolving around important questions and information about A1AD. She also wrote Living with Alpha-1 Antitrypsin Deficiency with her mom Marie Bowick, who is an A1AD patient. Their new book, coming out August 27, 2019, offers the most up-to-date information on this illness.
Standard of Care for Alpha-1 Antitrypsin Deficiency (A1AD) Patients
More than 100,000 individuals in the U.S. suffer with alpha-1 antitrypsin deficiency (A1AD), a rare genetic, incurable disease which causes the liver to not produce a certain protein which protects and keeps the lungs functional. What information do you need to know about the standard of care for this disease?
The standard of care for patients who could potentially have A1AD needs improvement. Appropriate standard of care for A1AD patients is crucial as it is a potentially life threatening illness.
Patients go to emergency rooms because they are having trouble breathing, have a high heart rate, suspect they have the flu, or other reasons, but are ignored or belittled because the emergency room doctor doesn’t know enough about A1AD. It is a rare illness, so doctors don’t test for it as much as they should. The key is to catch it as soon as possible so the patient can start augmentation therapy and slow the progression or have transplants if that’s something the patient wants.
Going to the emergency room with breathing problems is scary. We feel like emergency rooms aren’t equipped to handle such scenarios, but that’s where your doctor asks you to go if you have problems after hours. Patients with A1AD need to be taken seriously by all medical professionals and receive the best care. Patients who have A1AD may have supplemental oxygen to help keep their oxygen saturation level at a normal range.
Unfortunately, this is the reality for so many patients who suffer with A1AD: doctors dismissing their symptoms because they don’t know enough about the illness, being misdiagnosed, and treated poorly. It is time to put an end to this. If more doctors were aware of A1AD, patients would be able to start treatment sooner rather than later.
For more articles and information on A1AD, please click here.
Samantha Bowick has a Master of Public Health degree from Liberty University. She received a Bachelor of Science degree in Health Care Administration at Columbia Southern University. She is devoted to using her education and experiences to advocate for women who suffer with endometriosis and other chronic illnesses. She is the author of Living with Endometriosis. She currently lives in Aiken, South Carolina.
Marie H. Bowick has lived in Aiken, South Carolina her entire life, and was diagnosed with A1AD at 46 years old. She has been married for 27 years and is the mother of two daughters. She worked in manufacturing for 15 years and then became a caregiver to her mother, father, and youngest brother.