Hi, I have not been diagnosed with Lupus but I am doing a research paper on Lupus for my Pathology course (Biomedical degree). My mom was diagnosed with Fibromyalgia, Arthritis and Idiopathic Environmental Intolerance Syndrome when I was 4 and although they are different autoimmune disorders, from what I have found many of the challenges (personal and familial) are similar. One section of my paper I am struggling to find information on is the impact on the community following diagnosis. From personal experience, I know that doctors often overestimate their patient’s abilities (the number of times people have asked why my mom can’t/isn’t working when obviously she can’t is ridiculous!). Many organizations explain what is known of the etiology of lupus and what treatments are available but not what happens afterwards or even during the diagnosis to the patient and the community, which is what I really need to know.
I am looking for information on length of time before diagnosis (time symptoms began to occur to official diagnosis), any misdiagnoses along the way, impact and support from family members and outside help from the community (i.e. immediate/extended family, personal support workers, cleaning staff, government organizational help). As the child of someone with an autoimmune disorder I have had to step up and be more involved with the running of the household than my peers along with our wonderful cleaning lady and be the person backing my mom when people don’t understand why she “chooses” to be this way. I know that some of these questions are fairly personal but I hope you will feel able to share some basic details. I feel that going directly to those with the diagnosis will provide the most accurate, first-hand knowledge information for my report. Although this is just a report, one day it could help find a cure for lupus!
My email if you don’t feel comfortable posting on the feed is;
[email protected] Thanks,
Sarah