Sharing the Journey: Resources & Tools That Helped You During Your Diagnosis
The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.
This month, we asked Sharing the Journey participants the following question:
When you were first diagnosed, how did you stay updated on the latest in lupus and what resources and tools did you find most helpful and beneficial in your lupus journey?
I was diagnosed with SLE in early 2010. I had absolutely no idea what it was and even more alarmed to find out there was no cure. What credible information I did find on the internet at the time was centered around women. Even scouring through bookstores, I only found references for women. A middle-aged man displaced, dumped off at the wrong bus stop without a map, luggage lost, wallet stolen. But eventually the Lupus Foundation of America Walk event surfaced on one of my website searches late 2010 - early 2011, and when it was announced that an inaugural walk was to be kicked off in my home town of Tampa that May, I was in. Finding the LFA Florida Chapter through the walk and subsequently having so many resources available through the organization’s ever-growing website has been invaluable. The Florida Chapter and the walk event also connected me with so many wonderful people living in my community with lupus. And even a few other men that got tripped up and stumbled off the bus at the wrong stop. – Rob
I was diagnosed at age 11, before there was social media. Even at that age I was very involved in staying up-to-date on information. Most of that information came from my team of pediatric rheumatologists and the hospital social worker who supplied me with new material at each visit. – Kayla
When I was diagnosed, I was 10 years old and a lot of the resources that are available now weren't available to me 28 years ago. I stayed updated by speaking with my rheumatologist and my father who was also diagnosed as a pre-teenager/teenager. – Jaime
When I was first diagnosed, I stayed updated through my rheumatologist and my mother would look at LFA’s website and join support groups. I was a child at the time and wasn’t researching due to the time period and the availability of such research to me. There weren’t many children diagnosed at the time.– Angel
When I was first diagnosed, I found the resources on the LFA website invaluable. They contained info on what caused my disease, the symptoms, and how to talk about it to other people. I was also an avid subscriber of the LFA magazine, which inspired me with stories of people achieving amazing things despite their illness and tricks for lifestyle changes that helped me feel better. These resources allowed me to come into my appointments with my rheumatologist much more informed - I was able to ask more pointed and specific questions as a result. I also appreciated the handouts that my rheumatologist provided me with during my visits as they gave me a more in-depth look at the long-term effects of this condition.– Becca
When I was first diagnosed, I had a rheumatologist and a nephrologist. I was 12 years old when I was diagnosed and have been in remission now for about 6 1/2 years. I am 22 years old and I am doing great. I first started using LupusConnect to interact with other lupus survivors. I even had members ask me questions. One vivid question I got was from a man asking how to interact and deal with his girlfriend’s illness. I became an advocate for lupus and have been posting on this site since I was 17 years old. – Kyra
From when I was first diagnosed to this day, I have found everything I know about lupus straight from the Lupus Foundation of America. The doctor who diagnosed me didn’t explain anything to me and when I left her office I felt like I was being released into a new world that I knew nothing about. I have found all of my information, resources, support, and even new friends through LFA. Their website has been incredibly informational and helpful for medical reasons, and their social media platform has helped me form bonds with people going through the same thing. – Beccah
Information on lupus and management of the disease has come a long way. Over the years, our understanding of lupus has increased thanks to advanced research and more people with lupus sharing their experiences and symptoms. With these new insights, lupus experts and physicians are able to provide effective support programs and tools to lupus warriors and their caregivers.
At the Lupus Foundation of America, we’ve worked closely with researchers and the wider lupus community to improve the diagnostic process and provide the most updated news and information on lupus. The National Resource Center on Lupus is a great hub for information, whether you are living with lupus or want to support a loved one with lupus, and covers topics from living with lupus to treating lupus and much more. If you’re looking to connect with other lupus warriors and find support, our support groups and national network of chapters are here for you, and our online lupus community LupusConnect offers a space to connect with others online. It’s also important to find the best care team, and keep an open line of communication with your doctor. Should you have any further questions, our health education specialists are available and happy to assist you throughout your lupus journey.