Out of billions of people in the world, 1 out of 100,000 is suffering from сystic аibrosis, a progressive genetic disease that causes lung infections and limits the ability to breathe. This is because сystic аibrosis affects the cells that produce mucus, sweat and digestive juices, and causes the fluids to become thick and sticky. They then cover the tubes, ducts and passageways in the lungs. This genetic disease is caused by their parents, carrying gene each of CF and having a 25% chance that their child will have CF. For patients with сystic аibrosis, ‘cross-infection’ between each other can pose serious death risks. CF patients have ‘bugs’ in their lungs that are harmless to people who do not have the condition, but it is easily transmitted from a CF patient to another. When there is more than 1 person with CF at one place, a distance of 6 feet (2 meters) at all times has to be between these patients. A distance of fewer than 6 feet can lead to germs interchanging, which can create an infection. No two patients are the same, therefore each ‘bug’ inside of the patient’s lungs is each uniquely different. When two CF patients meet, it increases the risk of the patients to develop infections from the different ‘bugs’ in each patient’s lungs. Some dangerous infections include B. Cepacia complex and pseudomonas aeruginosas.
Researches have shown that because of сystic аibrosis, they tend to suffer from depression. They are more likely to experience depression than people in the general population. Mainly, aspects of living with CF and how it has affected their life is the reason most CF patients and parents experience depression. Lives of CF patients can be very different from healthy children. CF patients need special food, treatments, and regular procedures like blood tests. Other than that, behavioural challenges accompanied by feelings are different than normal children. Viewing from the eyes of a CF patient, Katherine Scrievener, stated that she struggles not to feel restricted by the forever feeling of sadness that comes with having a life-shortening illness, сystic аibrosis. She struggles to feel happy for her friends who achieve their milestones. She struggles to relate to her peers. She struggles to relate to everyone. All of her struggles lead her to be lonely and isolated. However, connecting with the CF community online helped her in fighting the loneliness. One of the social networks such as Cystic Fibrosis Canada, a national charitable non-profit corporation which helps CF patients find one another and converse from video-chat, instant message, and online forums. As a non-profit corporation, they invest more in life-saving CF research and care. They are one of the top organizations who committed to finding a cure for сystic аibrosis (CF). They invested more than $261 million for leading research, innovations and care for patients with сystic аibrosis. As of today, they continue to fund leading research projects, fellowships and studentships to find a cure for сystic аibrosis. They provide social networks for CF patients to gain networks with other CF patients, without the boundary of 6 feet apart.
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Nowadays, due to the evolution of technology, it is more accessible for CF patients to gain a network and communicate with other patients as well. Because they struggle to relate to normal children, interacting with other patients can allow themselves to feel less lonely, which can reduce the probability of them getting depression. Aside from communication with others, social networks can also be used as a source of information and support. Other than as a platform of social networks for CF patients, it could also be used for promoting patient engagement, facilitating access to information about health and services, and discussing research.
In my opinion, I support that CF patients use technology as a bridge between a patient to another, as support to other patients through donation and charities, and even as a source of information and researches. Other than being connected to the world, CF patients can express themselves and escape the restrictions that CF has blocked them from doing, which can decrease the probability of them to get depression. It helps them to be connected to other CF patients that experience mostly the same things they experience as well. Studies of 11 adolescents have shown that small support group has proven that 100% of them agree that these support groups made them feel connected to other teens with CF. Not only will they exchange their experiences or get along with each other, but also to support each other through these support groups that the internet has provided them with. This makes them feel that they aren’t alone, because other patients also feel the same way as well. Through these support systems, it can decrease the rate of depression through connections they gain on the internet. Patients may learn from each other’s experiences regarding CF, help prevent feelings of isolation, and also prevent the possibility of them even anxiety and depression from starting in the first place.
In conclusion, it is shown that CF patients tend to get depressed mostly because there are several restrictions regarding their sickness. Not only are they restricted to be less than 2 meters away from other CF patients, but it also limits their connections with other people, which can affect their social life with other people. Mainly, loneliness is an effect that patients experience since they cannot relate to anyone other than other patients. In addition to that, they aren’t able to connect with other patients as well. This may cause them to be more likely to experience depression.
References
- https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/
- https://www.cff.org/Life-With-CF/Caring-for-a-Child-With-CF/Working-With-Your-Childs-School/When-There-s-More-Than-One-Person-With-CF-in-the-Same-School/
- https://www.cysticfibrosis.org.uk/the-work-we-do/conference-and-meetings/cross-infection-at-events
- https://www.thestar.com/life/health_wellness/2013/05/16/cystic_fibrosis_patients_cant_risk_health_by_meeting_in_person_but_now_have_online_hangout.html
- https://www.cysticfibrosis.ca/
- https://www.cff.org/Life-With-CF/Daily-Life/Emotional-Wellness/Depression-and-CF/
- https://cysticfibrosisnewstoday.com/2017/07/05/cross-infection-danger-living-cystic-fibrosis/
- https://www.cff.org/Living-with-CF/Emotional-Wellness/Depression-Anxiety-and-Cystic-Fibrosis-What-the-Guidelines-Mean-for-You.pdf
- Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, Tiboshc MM, Brucefors AB, Yüksel H, Catastini P, Blackwell L, Barker D. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014;69:1090–1097. doi:10.1136/thoraxjnl-2014-205983
- https://cysticfibrosisnewstoday.com/cystic-fibrosis-emotional-wellness/
- https://www.cff.org/CF-Community-Blog/Posts/2015/A-Little-Less-Lonely/
- https://openres.ersjournals.com/content/2/1/00015-2016
- https://www.thestar.com/life/health_wellness/2013/05/16/cystic_fibrosis_patients_cant_risk_health_by_meeting_in_person_but_now_have_online_hangout.html
- https://www.thelancet.com/pdfs/journals/lanres/PIIS2213-2600(15)00436-1.pdf
- https://cysticfibrosisnewstoday.com/2017/10/03/danger-cross-infections-living-cystic-fibrosis
- https://www.cfcanadahomecoming.com/
- https://www.mayoclinic.org/diseases-conditions/cystic-fibrosis/symptoms-causes/syc-20353700
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