Wednesday, June 16, 2021

Lupus: Challenges and Accommodations

 

Lupus: Challenges and Accommodations 

            


 (Piga & Arnaud, 2021)

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


 (Azeal Dermatology Institute, 2020)

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) (Azeal Dermatology Institute, 2020). Additionally there are Chronic Cutaneous (CCLE), Drug-Induced and Childhood SLE (Johns Hopkins Lupus Center). With the variation types of Lupus it is understandable that different challenges may arise. All Lupus types may come with some form of physical impairment such as rashes. This could be a challenge for someone in a face to face work environment. There are also the fatigue and pain factors that are associated with the disease. There are simple solutions to fix these issues such as pain medication. Working from a virtual environment verses on site employment. Having things such as FMLA and paid leaves available and utilize them when ill. 

Challenges and Issues for Family Members

 (Lupus Foundation of America, 2013)

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 (CDC, 2018). Especially if the patient has children it is the fear of their children potentially having the disease. With not much information and ongoing research on Lupus there is no guarantee that Lupus is not possibly genetic. Aside from the immediate fear, the changes in activity can be very difficult to handle. For an active person now becoming inactive and/or house bound can change the family’s dynamics. The family or the person with Lupus can start to feel lonely and isolated (Lupus Foundation of America, 2013). This is important to acknowledge as a person may began to feel the stages of grief without there being a death (Marini & Stebnick, 2018).

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 (Lupus Foundation of America). If for any reason the child stays in class there can be a care plan and medication times in place. The goal is to ensure treatment is available for the child regardless of location.

Societal Awareness and Accommodations


 (Lupus Foundation of America)

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 (Leung, Ra, Baker, & Kim, 2019)

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



1 comment:

  1. 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.
    https://www.suboxone.com/

    ReplyDelete

Lupus: Conduct

                                                                Lupus: Conduct Lupus is a protect disability according to rules and regula...