The Universe of Cystic Fibrosis
Cystic fibrosis is an inherited chronic disease that causes persistent lung infections and limits the ability to breathe over time. Cystic Fibrosis (CF) affects more than 30,000 people in the United States alone, including children and adults. In order to live with CF, a person must take medication every day, perform chest physical therapy twice a day, and follow a special diet. People living with cystic fibrosis are often not able to do the same things as others their age. This can be frustrating as very ordinary tasks, like having long conversations come with the concern of catching an infection or having trouble breathing because of the disease.
An increase in the average lifespan
As of yet, there is no cure for cystic fibrosis. However, those afflicted by it are living longer, healthier lives than ever before to the point that babies born with CF are now expected to live into their mid-40s and beyond. Life expectancy has improved to the point that there are now more adults living with CF than there are children. We have medical advances and patient advocacy groups to thank for these major advances. Prior to the 1950s and the advent of better medical solutions and the concerted efforts of CF advocacy groups, children with cystic fibrosis rarely made it to the very young age of 5. However, the 1950s and 60s brought with it the introduction of airway clearance techniques, pancreatic enzymes, and antistaphylococcal antibiotics as treatment options, and as a result, CF life expectancy started to increase. By the 1960s, antipseudomonal antibiotics were introduced to the armoury of treatment solutions, increasing the average life expectancy to 15. This period also brought with it the first successful pregnancy by a woman with CF.
Between the period of the 1970s and 1990s, life expectancy saw a gradual climb up to age 31 due to further medical advancements such as lung transplants and DNase. Median life expectancy jumped to 44 between 1993 and 2017, the implication being that those born between 2013 and 2017 can expect to live to age 44 and possibly more. A study conducted between the US and Canada revealed that those born in Canada were prone to live 10 years longer; the difference between the two countries was narrowed down to the difference between the two health systems.
Impact upon growth & development in children
Children born with cystic fibrosis are faced with health problems in the forms of weight gain, growth, and physical development. Typically, trouble gaining weight and keeping weight can be attributed to the gastrointestinal (GI)l system’s inability to absorb the nutrients required to grow. Children with CF experience these problems because the thick mucus compromises (clogs) the functionality of the tubes that lead in and out of the liver, pancreas, and intestines. Due to these blockages, an insufficient amount of enzymes get mixed with the food, and without these enzymes, the body cannot consume food nutrients. Children with CF have a tendency to burn more calories due to the strain on their lungs and immune system, little ones with CF need to double the caloric intake recommended for normal childhood growth. To alleviate symptoms and combat the situation, doctors will prescribe pancreatic enzyme replacements and vitamin supplements, and refer parents to a dietician with CF experience to create an eating plan geared towards providing their child with enough nutrient-rich calories while also fending off eating fatigue.
Impact upon romantic relationships
People with cystic fibrosis know all too well that it affects every part of their lives, and dating and relationships are no exception. Relationships are a big concern for those in the CF community, with many worrying about it from its inception to marriage and the life that follows. When it comes to luck in love, CF relationship experts have suggested that to strengthen one’s relationship with a significant other, the following tips should be followed:
- Be frank and open: From the very start of the relationship, be open and honest about CF and help your partner understand it.
- Strike a balance between your health and the relationship’s health: Do your best to find a balance between making time for your partner and time for your health requirements.
- See to the needs of your partner: Your responsibility to your health, along with your various daily activities and routines can demand a large faction of your time and energy. With this in mind, it is still important to exercise proper communication to make sure their needs are met and that they feel as loved and supported as you do.
Marriage and family life
According to the Cystic Fibrosis Foundation, the number of people with CF who are married or living together has increased quite dramatically. Statistics from the 2017 Patient Registry Annual Data Report showed that 43.4% of those in the registry had tied the knot while those living together accounted for 5%. The same report went on to reveal that due to the improvements in their overall health and longevity, more women with CF have started having children. Since the 1990s, this number has grown. According to the report, in 1990 one hundred and thirty-eight females reported a pregnancy. By 2017, the number of pregnancies reported had practically doubled to two hundred and seventy-three.
If one partner in a relationship has cystic fibrosis, then before getting pregnant, it is suggested that both parties submit themselves to genetic testing and counselling. As the person with CF will carry over a copy of the CF gene to their offspring, it is of paramount importance to ascertain whether their partner is also a carrier. Sexual health issues affect both men and women with CF and this could lead to extra medical procedures to induce pregnancy. Such procedures may include artificial insemination, in vitro fertilisation, and medications to foster ovulation.
Women with cystic fibrosis might require the services of an obstetrician who’s practiced in high-risk pregnancies. Imperative to falling pregnant and carry a baby to term is optimal lung function and nutrition. Some couples elect to start a family early when their health is still good and thus lends itself to a successful pregnancy. For CF couples, having children early in life also means a better chance of living long enough to look after them and see them grow. Health regimen of a person with CF is of great importance, both men and women with CF should plan for additional help in caring for their baby so that their own health doesn’t suffer.
The life of a person with cystic fibrosis is one of constant vigilance. This affliction causes both physical and emotional issues. However, it’s certainly not all doom and gloom, and these days there are many ways for people with CF to cope with the challenges that they face. There are many certified support groups which CF patients can attend. Such support groups provide platforms on which those with CF can share their experiences and offer support to each other.
CF patients are extremely susceptible to illnesses and viruses, and common ailments such as a cold or flu can turn deadly. As a result, many CF patients wear face masks to prevent viruses and bacteria from entering their lungs. The Cambridge Mask PRO has proven its utility when it comes to filtering our air pollution, viruses, and bacteria. In fact, it’s been tested and certified to eradicate 99% of what people breathe.
Finally, medical breakthroughs are happening all the time as scientists in the medical fraternity, bolstered by the many CF advocate groups, continue to work on treatment options and drug combinations in the quest for health and normalcy.
Disclaimer: Cambridge Mask is not a medical website. For any medical questions or advice, please consult a doctor or professional medical advisor.