We’ve carefully selected these blogs because they are actively working to educate, inspire, and empower their readers with frequent updates and high quality information. If you would like to tell us about a blog, nominate them by emailing us at firstname.lastname@example.org!
As many as 1.5 million people in the United States have lupus, according to the Lupus Foundation of America. Despite this, many people don’t understand the disease, and those suffering are often left feeling alone.
The disease can be painful and deadly, but many people live full lives with this diagnosis. Because the general public doesn’t know much about lupus, people living with the disease may be more successful finding support online. We combed the Internet to find the best sources of support, and came up with nine:
Sarah Gorman was a newlywed and successful television producer when she was diagnosed with lupus in 2001. For four years, she fought tooth and nail to battle the disease and hold onto everything in the process, before deciding to focus her energy more on her everyday well-being. On her blog, Despite Lupus, you can read about ongoing developments in the treatment of the disease and Sarah’s personal stories of living life with lupus, as well as engage with her very active community of followers.
Getting Closer to Myself
Living with one serious disease is hard. Living with two can be debilitating. Leslie Rott, M.H.A., Ph.D., the blogger behind Getting Closer to Myself, was diagnosed with lupus and rheumatoid arthritis in 2008. Her blog is a chronicle of her life — both its ups and downs. Personal posts focus on issues like self-worth and past relationships, while others spotlight recent wins in the world of pharmaceuticals.
Tweet Leslie: @LeslieRott
Life of a 30-Something with Lupus
Living with a serious disease is difficult no matter what your age, but as a young woman, it can be particularly hard. “Miz Flow” writes openly and honestly about her struggles with lupus, like affording treatment as a recent college graduate and dealing with hospital visits, as well as other events in her life, like the passing of a friend. But through it all, she remains positive, even injecting regular doses of laugh out loud humor.
Tweet her: @miz_flow
MarlaJan isn’t just living with lupus, but congenital heart disease, too. She’s a nurse and a patient, and her blog posts range from serious — like one about the complications of a recent double mastectomy — to the outrageously humorous. One thing we particularly like about LuckFupus is its realness. Life isn’t all bad, even when you’re fighting lupus, and it certainly isn’t all great. Striking a balance and finding a reason to be joyful, no matter what the situation, seems to be working for MarlaJan.
Tweet her: @marlajan
Lupus Foundation of America, Connecticut Chapter
The Lupus Foundation of America is one of the largest nonprofits pushing for awareness and advancement in lupus treatment. This blog, from the organization’s Connecticut chapter, is extremely active. Rarely do you see such a regularly updated blog from a local chapter of a large nonprofit. Not only useful for people living in Connecticut, the blog includes health tips, treatment information, and support for those with lupus and the people who love them.
Tweet them: @CTLupus
Lupus, Humor, and Wellness
Humor and pain don’t often go together… or perhaps they don’t go together often enough. Carla Ulbrich has been living with the disease for more than 20 years. She believes humor is one of the things that has helped her cope with her illness, and looks for ways to find humor in situations, even those you wouldn’t think could be humorous at all. She balances well-informed discussion with antidotes, putting a smile on your face, and covers everything from reviews of the best places to get a remote doctor consultation to how she’s shifting from “crapatarianism” to nutritious eating.
LupusChick is a nonprofit organization that works to empower people living with lupus through college scholarships, emergency assistance, and more. It was created by Marisa Zeppieri, who was diagnosed with lupus in 2001. On the organization’s blog, Marisa and other contributors discuss lifestyle tips, review products, share recipes, talk about the latest news and research, and share the stories of other people living with lupus.
Tweet Marisa: @LupusChickcom
Molly’s Fund Fighting Lupus
Molly’s Fund Fighting Lupus is a nonprofit organization dedicated to raising awareness and money in the fight against lupus and research for a cure. Their blog is an all-lupus resource. You can read about the common, as well as not so common, symptoms of the disease, as well as learn what to expect with different treatments and how to live with the social effects of lupus. Most of the posts are more medically based, making them especially useful if you’re looking to learn more.
Tweet them: @MollysFund
Sometimes, It Is Lupus
Iris Carden is a former journalist and church minister. She was diagnosed with lupus in 2006, though she had experienced unidentified symptoms throughout her life. She started Sometimes, it is Lupus to chronicle her journey, bring attention to the disease, and connect with other lupus patients. Upbeat and informative, we like that she works so hard to update it frequently, ensuring readers have something new to read every time they make a return visit.
Tweet Iris: @Sometimesitislu
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