Struggles Of Thalassemia Patients

Updated: Aug 31, 2021

Written & Researched By Natalie Boquist



Overview: What is Thalassemia?


Thalassemia is a genetic disorder, which means it is an inherited medical condition caused by changes in one’s DNA (“What is Thalassemia?”). For a patient with thalassemia, the body does not make enough hemoglobin, a protein that contains iron and transports oxygen throughout the blood (Davis).



Symptoms of Thalassemia


People living with thalassemia are affected in many different ways—each person is different, and reacts differently to the lack of healthy red blood cells. Plus, life with thalassemia can be even more distinct between people with different types of thalassemia. Many varying factors can lead to different types of thalassemia, such as the part of the hemoglobin affected and the severity of the condition itself.

People with alpha thalassemia live mostly normal lives, especially those with mild cases. Sometimes, especially in children, blood transfusions are required so that afflictions like anemia (characterized by fatigue and muscle weakness) can be treated. These treatments can also cause unexpected struggles for thalassemia patients, such as excess iron from blood transfusions (“Alpha Thalassemia (for Parents) - Nemours Kidshealth.”).


Those with intermediate to major beta thalassemia can also live long lives with continued care and treatments. Bone deformities from stress on bone marrow, enlarged spleens, and tiredness/moodiness are all symptoms that can occur from beta thalassemia (“Beta Thalassemia (for Parents) - Nemours Kidshealth”).



Living with Thalassemia


While thalassemia symptoms and treatments can affect daily life significantly, many patients have been known to live normal lives. With more severe forms of thalassemia, it can be necessary to devote lots of time or energy into treatments during the day, which can unfortunately take time away from one’s social, educational, and work life. Recent scientific advances, however, have made regulating iron from frequent blood transfusions easier.


Another struggle that some people living with thalassemia face is an enlarged spleen (Miller). Because the spleen, which removes damaged and unhealthy red blood cells from the blood, is sometimes overworked for thalassemia patients, it can become enlarged. Consequently, those with enlarged spleens cannot participate in particular activities, such as contact sports, because the organ is more vulnerable to injury (“Spleen Problems and Spleen Removal”). If the spleen is somehow damaged, thalassemia patients would need to have it removed altogether, which would limit their daily activities for multiple weeks (Miller).


Indeed, people with thalassemia face many challenges throughout their lives, and are forced to change and adapt everyday. With modern medicine, nevertheless, even those with severe thalassemia can live long, happy lives.



References

“Alpha Thalassemia (for Parents) - Nemours Kidshealth.” Edited by Robin E. Miller, KidsHealth, The Nemours Foundation, July 2015, kidshealth.org/en/parents/thalassemias.html. Accessed 17 August 2021.

“Beta Thalassemia (for Parents) - Nemours Kidshealth.” Edited by Corinna L. Schultz, KidsHealth, The Nemours Foundation, Aug. 2019, kidshealth.org/en/parents/beta-thalassemia.html. Accessed 17 August 2021.

Davis, Charles Patrick. “Hemoglobin: Normal, High, Low Levels, Causes & Symptoms.” MedicineNet, MedicineNet, 18 Feb. 2021, www.medicinenet.com/hemoglobin/article.htm. Accessed 15 August 2021.

Miller, Kelli. “Splenectomy (Spleen Removal): Complications, Recovery, and More.” WebMD, WebMD, 23 Jan. 2020, www.webmd.com/digestive-disorders/splenectomy#:~:text=If%20you%20have%20an%20open,so%20the%20wounds%20can%20heal. Accessed 19 Augusts 2021.

“Spleen Problems and Spleen Removal.” NHS Choices, NHS, 3 May 2019, www.nhs.uk/conditions/spleen-problems-and-spleen-removal/#:~:text=The%20spleen%20has%20some%20important,or%20damaged%20red%20blood%20cells. Accessed 19 August 2021.

“What Is Thalassemia?” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 30 Mar. 2021, www.cdc.gov/ncbddd/thalassemia/facts.html. Accessed 15 August 2021.

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