BLOG 4: Psychological Concepts, Theories, and Models

BLOG 4: Psychological Concepts, Theories, and Models 

Pyschological Concepts and Theories: 

Though those with Sanfilippo Syndrome are born with the condition, most won't have symptoms until their preschool years of 2-6, leading to a slow regression in cognitive and physical abilities, such as lss of motor sills, speech and developmental delays, and behavioral issues that can be wrongly diagnosed as autisim early on. (Carroll, 2019) There are typically phases in which the progession from the disease begins on children. The first being developmental delays being noticed, espically in speech and language. The second is a detterioration in behavioral altercations, and can be shown in ways that are impulsive, hyperactive, anxious and cause sleep disorders. The third phase is a serious degression in the individual, leaving them nearly at a loss to walk or swallow, commonly developing seizure disorders and various infections through the body. The loss of these abilities often leads to death between the second and third decade of life. (Music therapy and Sanfilippo Syndrome: An analysis of psychological and physiological variables of three case studies - orphanet journal of rare diseases 2021) Sanfilippo syndrome profoundly affects the quality of life of individuals and their families. Psychological theories related to quality of life, such as subjective well-being and life satisfaction, can provide insights into the emotional experiences and coping mechanisms of affected individuals and their caregivers.

Logan Pacl is a child who has been diagnosed with the disease, his story told here:

 Teen Battling Sanfilippo Syndrome, aka ‘Childhood Alzheimer's’



Inclusive communities and supportive friendships are essential for individuals with Sanfilippo syndrome to experience a sense of belonging and social connectedness. Encouraging inclusive activities and fostering positive relationships can enhance the individual's well-being and overall quality of life. Healthcare professionals, including physicians, therapists, and psychologists, play a crucial role in providing comprehensive care for individuals with Sanfilippo syndrome. This includes medical management, symptom relief, and psychological support for both the affected individual and their family members. 


Sanfilippo Syndrome and Autisum Spectrum Disorder have similar medical diagnoses, such as the limination of remembering or applying information, concentrating, adapting or managing oneself, frequent distractibility, significant difficulties learning and using academic skills or interacting with others. Though similar to one another, Sanfilippo Syndrome carries the burden of a shorter lifespan, which only causes more stress to the family as they go through this diagnoses. (Social Security n.d.)  Sanfilippo syndrome presents unique challenges that encompass both physical and psychological aspects. By applying relevant psychological concepts, theories, and models, professionals, families, and friends can collaborate to provide holistic support and improve the quality of life for individuals affected by this rare genetic disorder.


Citations;

Carroll, R. S. (Ed.). (2019, September). Sanfilippo syndrome (for parents) | nemours kidshealth. KidsHealth. https://kidshealth.org/en/parents/sanfilippo-syndrome.html

Pérez-Núñez, P., Lázaro, E., Amayra, I., López-Paz, J. F., Caballero, P., Martínez, O., Pérez, M., Berrocoso, S., Al-Rashaida, M., García, M., Rodríguez, A. A., & Luna, P. M. (2021, November 20). Music therapy and Sanfilippo Syndrome: An analysis of psychological and physiological variables of three case studies - orphanet journal of rare diseases. BioMed Central. https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-02123-6

SSA. (n.d.). Social Security. 12.00-Mental Disorders-Adult. https://www.ssa.gov/disability/professionals/bluebook/12.00-MentalDisorders-Adult.htm#12_10

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