Lupus: Challenges
and Accommodations
Lupus
can be seen as pie chart full of challenges. The client is in the center of
that chart, each piece represents a part of them. Either a part cannot be fixed
or if fixed will be affecting another part. This is Lupus treatment. Any form
of treatment can cause side effects that can negatively impact the patient.
Even, if it is necessary for the survival of the patient, there are
consequences for every treatment option.
Challenges and
Solutions
The
most common form of Lupus is the SLE (Systemic Lupus Erythematosus). When
referring to Lupus, SLE is primarily what is being discussed. However there are
other types such as Neonatal (NLE), Subacute Cutaneous (SCLE) and Discoid (DLE)
Challenges and Issues for Family Members
The
Lupus recipient does not only have to focus on the challenges with the work
environment but the challenges amongst family. One of the first is fear of it
being genetic. Although not scientifically proven, some family members believe
that they too will have Lupus
Issues in
Societal Areas and Solutions (accommodations)
First Lupus is a protected disability, as with any disability it does not require employees to disclose to their employer. Later on in the employment if one becomes ill often it may be beneficial to disclose at that time. However, if a client is active and living and working with Lupus no information is obligated to be given. In other settings such as school and excreta many choose to complete schooling online. There is no need to go to in class settings if not mandatory. The goal is to learn to live with the disease and restructure life around it.
Mainstreaming the Child/Adolescent
With
children and school this can be very different as their needs may change with
growth. In assisting children with Lupus it is beneficial to notify the school
about the child’s illness. Often times the child may miss school thus require
alternate means of completing assignments. Educational plans such as IEPs can
assist with staying on top of the child’s needs regardless of where teachings
are being received
Societal
Awareness and Accommodations
Awareness
of the disease could help medical professionals and peers see signs of Lupus
sooner. The plus is that Lupus does not require many accommodations besides
tinted window seating areas in restaurants. Including case by case employment
and/or school adjustments that would be readily available if aware of the
disease. School and working environments are great gateways of introducing
Lupus to the world. No matter the type of Lupus one may have many suffer in
silence. This is in fear that those around them will not understand what they
are going through and why. This is true as many do not even know that Lupus exist
until diagnosed. A
recent study showed that even amongst those of medical professionals and family,
Lupus was hard to explain. Many sought variety of ways of receiving services
from medical professionals and even with information available. Some medical
professionals were unaware of the specifics when it came to treating SLE
Reference
Azeal Dermatology Institute. (2020). Lupus
Treatment. Retrieved June 15, 2021, from Azeal Dermatology Institute:
https://www.azealderm.com/autoimmune-skin-disorders-boulder/
CDC. (2018, October 17). Systemic Lupus
Erythematosus (SLE). Retrieved June 15, 2021, from Centers for Disease
Control and Prevention: https://www.cdc.gov/lupus/facts/detailed.html
Johns Hopkins Lupus Center. (n.d.). Types of Lupus.
Retrieved June 15, 2021, from Johns Hopkins Lupus Center:
https://www.hopkinslupus.org/lupus-info/types-lupus/
Leung, J., Ra, J., Baker, E. A., & Kim, A. H.
(2019, April 22). “…Not Having the Real Support That We Need”: Patients’
Experiences With Ambiguity of Systemic Lupus Erythematosus and Erosion of
Social Support. Retrieved June 16, 2021, from NCBI:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6858040/
Lupus Foundation of America. (2013, July 09). Managing
the impact of lupus on your family. Retrieved June 15, 2021, from Lupus
Foundation of America: https://www.lupus.org/resources/managing-the-impact-of-lupus-on-your-family
Lupus Foundation of America. (n.d.). Assistance at
school for children with lupus. Retrieved June 16, 2021, from Lupus
Foundation of America:
https://www.lupus.org/resources/assistance-at-school-for-children-with-lupus
Lupus Foundation of America. (n.d.). Lupus
Awareness Month Tools. Retrieved June 16, 2021, from Lupus Foundation of
America:
https://www.lupus.org/lupus-awareness-month/lupus-awareness-month-toolkit
Marini, I., & Stebnick, M. A. (2018). The
Psychological and Social Impact of Illness and Disability 7th Ed. New York:
Springer Publishing Company.
Piga, M., & Arnaud, L. (2021, January 11). The
Main Challenges in Systemic Lupus Erythematosus: Where. Retrieved June 15,
2021, from The Journal of Clinical Medicine:
file:///C:/Users/School%20Only/Downloads/jcm-10-00243-v2.pdf
First of all, I loved the look of your blog. I think you did an excellent job with spacing and illustration choices, very informative! You stated “there are consequences for every treatment option”. I found this most interesting, and most true. I am on medication that has another usual use, when people, even hospital staff, hears I am on Suboxone therapy their ears perk up and their hearts shut down. The given use for my medicine is opiate substitution to avoid withdrawal., typically from heroin. In my case, I take a 2mg dosage for arthritis pain, and it works very well,(Suboxone.com). But there are consequences to this therapy, such endless nausea and vomiting. Deciding which is worse, nausea or pain, plus the judgemental treatment I receive from well, just about everyone.
ReplyDeletehttps://www.suboxone.com/