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The Episodic Challenges of Living with Lupus By Louise B.

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Presentation on theme: "The Episodic Challenges of Living with Lupus By Louise B."— Presentation transcript:


2 The Episodic Challenges of Living with Lupus By Louise B

3 Overview What is Lupus; how is it episodic; what are the implications for Employers Employeers Why does volunteering work? What would ideal employment look like?

4 What is Systemic Lupus Erythmatosus The disease with 1,000 faces. The manifestation of the disease is different for every person. It is an autoimmune disease - the body attacks itself and any system in the body.

5 Some people may have skin rashes, others have kidney disease, and a lot have muskoskeletal problems such as arthritis or tenosynovitis. It can be mild or it can be severe enough to lead to premature death.

6 My Experience controlled but chronic but it has not spared any system in my body. Skin rashes, high blood pressure, extreme fatigue, anemia, tenosoynivitis in my shoulders, knees, wrists and feet, brain involvement, pleurisy and deafness Over the last 6 years, comes & goes countless specialists and many, many tests. have not worked ‘conventionally’ because of the unpredictability of this disease.

7 The Unpredictability ‘Expensive’ for employers to hire me. Employers, especially smaller ones, need support to hire someone who will be on sick leave unpredictably, or take time off to manage an illness due to doctor’s visits or, medical tests.

8 The Unpredictability Employers need to be compensated to hire my replacement, pay the higher insurance premium that would occur. Work colleagues need training on my illness so that they know what to expect and can support instead of become frustrated with the scenario of an episodic disability

9 Volunteering Fulfilling and lifted my spirits. I had not felt this way in a long time. I felt productive and I was making a very real contribution to society by helping someone else.

10 Why does volunteering work for me? They understand when I do not meet a deadline on Monday but am able to make it on Tuesday. I only volunteer at arthritis patient organizations because I know, from experience, that other volunteer organizations would not be as understanding.

11 There is a real flexibility about how I accomplish my work or how I meet deadlines. Meetings occur on-line and conference call meetings take place once a month. Perfect – no driving. Lupus is a fatiguing illness and just the act of driving to a location can expend a lot of the little energy I have.

12 Four requirement to work at a conventional job understanding of the episodic nature of my illness. flexibility work from home assurance of a disability pension, for financial security when not able to work due to periods of sickness.

13 Thank you!!

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