May is National Cystic Fibrosis Awareness Month creating the opportunity to learn more about a lung disease that affects more than 30,000 people in America.
Cystic fibrosis is a genetic disease that causes constant lung infections and may also impact other organs where there’s an accumulation of mucus.
While we still haven’t found a cure for cystic fibrosis, advancements in medical science—some delivered by infusion therapy—have made it possible for patients with the condition to live everyday life.
TwelveStone Infusion Centers are an important bridge between hospital care and home care for patients with cystic fibrosis, making infusion treatment less stressful and easier to manage.
Understanding Cystic Fibrosis
Cystic Fibrosis (CF) is a genetic mutation in the gene that helps regulate the movement of salt and water into and out of cells in the body. CF develops when this gene doesn’t work properly due to mutations or other reasons, causing thick, sticky mucus to build up in the lungs, causing breathing difficulty and other complications. Symptoms often include frequent lung infections, coughing, wheezing, shortness of breath, poor growth, or weight gain despite eating well, salty-tasting skin, difficulty digesting food, and clubbing (enlargement) of fingers/toes. Additionally, individuals are at an increased risk of other infections due to a weakened immune system, developing diabetes mellitus type 1 later in life, and males may experience infertility.
In the 1940s, most babies born with CF died in infancy. With advances in treatment, people with CF now live healthier and longer lives than just a few decades ago. Babies born with CF today can expect to live into their 50s and 60s.
Therapies developed over the past several decades—such as improved airway clearance methods, mucus thinners, inhaled antibiotics, and digestive enzyme supplements—have transformed CF from a deadly disease that killed most sufferers in infancy to a chronic condition. Continuing therapeutic advances are expected to further improve their quality of life and extend lifespans.
While there is no cure for CF, advances in treatment have extended the life expectancy and quality of life of people living with the disease. Treatment may involve various procedures, medications, and infusions, including airway clearance techniques, antibiotics, IV saline solution for hydration, a high-calorie diet, mucus thinners, bronchodilators, pancreatic enzymes, and newer-generation drugs known as CFTR modulators.
One of the keys to normalizing CF is establishing and maintaining a routine. The simple truth is that CF treatments can often consume a large part of your day—making comfort and convenience as important as the treatment.
TwelveStone Infusion Centers
TwelveStone Health Partners bridges the gap between hospital and home by offering an alternative setting for infusion therapies that helps keep CF patients from being readmitted to the hospital and possibly being exposed to infections. Our infusion centers are a safe, comfortable, and hygienic environment, and every member of our friendly and patient-focused staff is specifically trained in administering infusion therapies.
Because CF patients are at a greater risk of potentially fatal infections, all treatments are administered under strict safety protocols. Patients also have direct access to pharmacists who specialize in managing complex medication regimens associated with chronic conditions like CF.
Because each patient’s needs are unique, TwelveStone develops personalized treatment plans that address each patient’s medical history, lifestyle, and other factors.
Infusion treatments can be stressful, so we address each patient’s physical, mental, and emotional comfort. Private rooms equipped with reclining chairs, televisions, WiFi access, and refreshments make the experience as pleasant and positive as possible.
Living with Cystic Fibrosis
Cystic Fibrosis Awareness Month is an important time to recognize the difficulties and challenges those living with CF face. Perhaps the best resource for information is the Cystic Fibrosis Foundation (CFF). In addition to its vast online content library, CFF offers a free helpline at 844-COMPASS (844-266-7277), staffed by trained caseworkers available weekdays, 9 a.m. to 7 p.m. Eastern time.
With support from family, friends, healthcare professionals, and the TwelveStone care team, people living with CF can lead fuller and longer lives.
When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.