Hi everyone, my name is Bobbi and I'm the daughter of a terrific 55 year old lady with Lupus SLE. My mom started having symptoms within a few years of my being born. By the time I was 5-6 she battled with chronic pain and depression alone because she hadn't yet been diagnosed. She went from doctor to doctor who all told her the same thing (there's nothing wrong with her) and even worse (it's your imagination). It took her more than ten years of switching doctors and searching for answers before she was finally diagnosed both with hypothyroidism, chronic fatigue and Lupus SLE. That was more than 10 years ago, and I can honestly say that it put a tremendous strain on our family, but mostly my mom because she was never understood. Our household was not a healthy/happy environment due to a lack of education and understanding.
I'm 30 now (our family split up in a bad way when I was a teen) and my brother and I are still struggling to understand what my mom has been-and still-is going through. I've gone back to school and I'm now a full time industrial design student in Vancouver, BC. I recently enrolled in a medical design course that is focusing on assistive design and technology and rather than focusing on designing another brace, wheelchair, or regular assistive device... I'm interested in making my project about designing for long term illness and terminal disease. Specifically, I'm thinking of designing for lupus as another way to support my mom, connect with the lupus community and create awareness. Since my mom's only strategy is flare-up management, I thought I'd try to conceptualize a tool for this. My class requires co-creators and user feedback as part of the design process, but it is understandably difficult to find other people with Lupus to join in the creative process. I've joined the BC Lupus foundation and attempted to email contacts there, and never received a single reply. I'm actively searching other support groups and sites trying to find anyone that would be interested in helping a student (me) with feedback during my creative design process.
I read the rules of this forum to make sure, and I think research is permitted here, but please let me know if this in any way is inappropriate or violates the forum rules. If it is indeed okay to post for help on a student lupus research project here, please advise me where is best in the forums to post about it. Or if you are willing to make it a temporary sticky post, I'd love to share my process with the community.