You want to know a little about what it’s like living with lupus, ask a
Those are just a few of the bloggers we’ve been following lately who each offer different insight on the day-in and day-out challenges of living with this chronic and incurable condition.
Lupus – systemic lupus erythemotosis – is a hard to diagnose autoimmune disease with a wide range of unpredictable symptoms that mostly impacts women.
An estimated 5 million people worldwide have been diagnosed with Lupus. Individuals with African American, Latino and Native American ancestry are also at higher odds of getting the condition. While the symptoms can be managed, there currently is no cure. The good news is that in the last 60 years there have been great strides in treating the condition. In the 1950s the prognosis wasn’t good with only half of those surviving five years after their initial diagnosis. Today the survival rate is greater than 90 percent.
While we’ve learned a lot about lupus, we still have a long way to go. We know genetics plays a role, as do environmental and hormonal factors, but the intricate interplay of all those influences, or even why flare-ups are so unpredictable, is little understood.
In May of this year 23andMe and Pfizer joined forces to study the genetics of lupus. Working in collaboration with the Lupus Research Institute, we hope to gain a greater understanding of this unpredictable chronic disease and make findings that could lead to new treatments.
As part of the study we plan to recruit 5,000 people with lupus. In just a few months we’ve made huge strides toward that goal, enlisting more than 1,100 participants.
We know from listening to many of those who are living with lupus that one of the most important means of coping with the condition is connecting with others.
And in the spirit of our budding lupus research community, we are highlighting a few of the bloggers that have become beacons of information for those with lupus. So in no particular order here are five of the bloggers we’re reading.
Despite Lupus – Since first being diagnosed 14 years ago, blogger and now first-time author (of a book also titled “Despite Lupus”), Sara Gorman has a tried and true strategy for living with lupus by changing expectations and focusing on keeping herself healthy.
Undefeated Diva – Blogger Christina Gorgon, the “fiery Latina,” was first diagnosed in 2011. She writes about becoming a mom with lupus. Many of those with lupus, which is difficult to diagnose, can also relate to her story of spending two years enduring a strange assortment of symptoms – joint pain, chest pain, bald spots, and an inability to get out of bed – without knowing what it was that was making her sick. Her fighting attitude infuses each post.
Lupus Chick – Marisa Zeppier-Caruana is the Lupus Chick, and has been featured in several publications including US News & World Report, Glamour and WebMD. Marisa founded the site back in 2002, and also serves on the board of the Florida Chapter of the Lupus Foundation of America. On top of writing about lupus and advocating for those with the condition, Marisa is also the reigning Mrs. New York USA Universal, shooting for title of Mrs. Universe.
Flow On Lupus – Miz Flow first started showing signs of lupus as a 14 year-old. Now the 30-something blogger is a veteran and survivor, who has weathered a slew of symptoms, that have given her a wealth of knowledge about lupus that she shares on her site.
Molly’s Fund Lupus Blog – This Oregon based non-profit foundation started out of Molly McCabe’s struggle with lupus. Since co-founding the foundation, Molly has also become the face of the organization that offers those with the condition access to support groups in the Oregon area, online support and other resources.