Everything about cystic fibrosis
In the world of rare diseases, few conditions have seen as dramatic an evolution in research and treatment as Cystic Fibrosis. Once considered a fatal diagnosis in childhood, advances in science have transformed the outlook for many people living with the disease. Yet even with these breakthroughs, Cystic Fibrosis remains a life-altering, often life-shortening condition that demands round-the-clock attention and resilience.
For individuals and families affected by it, the condition is more than a clinical label. It is part of daily life, embedded in routines, hospital visits, treatments, and long-term planning. This article shines a light on what Cystic Fibrosis really is, how current treatments are changing what’s possible, and what options people can explore when the path forward becomes uncertain.
What is Cystic Fibrosis?
Cystic Fibrosis, often abbreviated as CF, is a genetic disorder that affects the mucus-producing glands in the body. A mutation in the CFTR gene disrupts the regulation of salt and water movement in and out of cells. As a result, thick, sticky mucus builds up—particularly in the lungs and digestive tract.
This mucus clogs airways, making breathing increasingly difficult. It also traps bacteria, leading to chronic infections and progressive lung damage. In the digestive system, it interferes with the absorption of nutrients, leading to malnutrition and growth challenges.
Because it is a recessive genetic disorder, a child must inherit two defective copies of the gene (one from each parent) to develop the condition. While it’s classified as rare, CF affects over 70,000 people worldwide, and it requires continuous care from infancy through adulthood.
Core symptoms and daily life
Cystic Fibrosis manifests in multiple systems of the body, but its most severe effects are respiratory. Over time, lung damage can become irreversible, leading to respiratory failure in advanced stages.
Typical symptoms include:
- Persistent cough with thick mucus
- Frequent lung infections
- Wheezing and shortness of breath
- Poor weight gain and growth, despite a good appetite
- Greasy, bulky stools and digestive issues
- Infertility in males due to blocked vas deferens
But behind the symptoms are the daily routines that define living with CF. Most individuals must commit to hours of airway clearance techniques, enzyme supplements with every meal, nutritional plans, and regular monitoring of lung function. For many, the day is structured around staying stable.
A turning point: new treatments changing the landscape
Until recently, CF treatment focused almost entirely on managing symptoms, clearing the airways, preventing infections, and supporting nutrition. But recent advances have introduced a new class of therapies that target the underlying cause of the disease: the faulty CFTR protein.
Known as CFTR modulators, these treatments (such as ivacaftor, lumacaftor, tezacaftor, and elexacaftor) help the protein function more effectively in certain genetic subtypes of the disease. The combination therapy Trikafta, in particular, has been life-changing for many people, improving lung function, reducing exacerbations, and enhancing quality of life.
However, these therapies:
- Do not work for all CF mutations
- May have limited long-term data
- Are extremely costly and often not universally accessible
Even for those who respond well, CF is still a progressive condition, and the body’s response can change with time. New complications, resistance to antibiotics, and cumulative lung damage can still lead to respiratory decline.
Facing advanced stages: when treatments fall short
Despite extraordinary advancements, some individuals still progress to end-stage lung disease. At that point, options narrow. Lung transplantation may be considered, but it comes with its own risks and limitations, shortage of donors, surgical complications, and the lifelong management of rejection risks.
This is a point few like to talk about, but many must confront. It is a moment of reckoning, where choices feel limited, and where families are often forced to weigh complex factors in an emotionally overwhelming landscape.
It’s here that some begin to look beyond today's science, not in desperation, but in hope that future innovations may offer what the present cannot.
Cryopreservation: a future-facing choice
Cryopreservation is not a treatment for Cystic Fibrosis. It does not reverse lung damage or correct genetic mutations. But for those who reach a point where all other options have been exhausted, it offers an alternative: to preserve the body, especially the brain, at extremely low temperatures after legal death, in the hope that future technologies may one day allow revival and repair.
This is not speculative fiction. The preservation process is based on solid principles of physics and biology. It involves stabilizing the body immediately after death, replacing bodily fluids with cryoprotective agents to prevent ice formation, and then cooling the body to -196°C for long-term storage.
Cryopreservation does not guarantee a second life. But it does offer a way to extend the possibility of one, to wait for a time when gene editing, tissue regeneration, or even full organ replacement may be within reach.
We’re here not to offer false hope, but to provide information, support, and the freedom to choose, even at life’s hardest crossroads. If you or someone you love is facing that kind of decision, we’re here to explain how cryopreservation works, what to expect, and whether it may be an appropriate next step.
About Tomorrow.bio
At Tomorrow.bio we are dedicated to advancing the science of cryopreservation with the goal of giving people a second chance at life As Europe’s leading human cryopreservation provider we focus on rapid high-quality standby, stabilization and storage of terminal patients preserving them until future technologies may allow revival and treatment.
Our mission is to make human cryopreservation a reliable and accessible option for everyone We believe that no life should end because current capabilities fall short.
Our vision is a future where death is optional where people have the freedom to choose long-term preservation in the face of terminal illness or fatal injury and to awaken when science has caught upInterested in learning more or becoming a member
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