lupus awareness

Lupus Weight Gain: Q&A with the founder of Making Lupus Look Good

Conditions, Lupus / By

Alyshia Merchant knows first-hand how lupus can affect you inside and out. After her diagnosis in 2012 and struggles with visible symptoms and self-esteem, she launched an organization called Making Lupus Look Good, which provides wigs and “glam sessions” to people with lupus-related hair loss and other symptoms. The organization currently serves people in Alyshia’s home […]

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Age-by-age guide to navigating reproductive health with lupus

Conditions, Lupus, Patient Experiences / By

Lupus can affect your reproductive health in a variety of ways throughout your life and can raise the risks of complications during pregnancy. Thanks to medical advances, the chances of having a safe pregnancy have improved — the key is careful planning. Check out this timeline of gynecological and reproductive health considerations when you have

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Member Christine’s Instagram takeover for World Lupus Day

9 Comments / Conditions, Lupus, Patient Experiences / By

In case you missed it or you’re not on Instagram, on World Lupus Day (May 10), PatientsLikeMe member Christine took over our Instagram to share her experiences and help raise awareness of lupus (May is Lupus Awareness Month). Christine is a native Californian, a social butterfly, an advocate and a member of our 2018 Team of Advisors (check

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Lupus Awareness Month: Lupus Warrior Jeanette recaps her D.C. advocacy trip

Conditions, Lupus, Patient Experiences / By

In honor of Lupus Awareness Month, meet PatientsLikeMe member Jeanette, who recently traveled to the U.S. Capitol to advocate for lupus research funding. (Psst — here are some ideas on how to “Go Purple” this May and raise awareness of lupus!) “I try to help the world,” says Jeanette Alston-Watkins (JeanetteA6872). The full-time working mom of two

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Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences

1 Comment / Lupus, Patient Experiences, Research / By

Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad). If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team

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Jokiva Bellard's lupus diagnosis

Instagram star Jokiva Bellard on living out loud with lupus: “You have to love yourself – you have to put yourself first”

2 Comments / Conditions, Lupus / By

Jokiva Bellard’s old wardrobe: Hoodies, jogging pants, loose clothes, long sleeves. In a word? “Tomboy. I didn’t want anyone to notice me.” She was covering up skin plaques caused by discoid lupus – which routinely brought stares and prying questions from the public. Then came the facemasks. The model, who hails from New Orleans but

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Bright ideas: Members share 7 head-to-toe tips for sun safety with lupus

Conditions, Lupus, Patient Experiences / By

With summer just around the bend, we’ve rounded up PatientsLikeMe members’ sun-safety and photosensitivity tips for people living with lupus. Photosensitivity is increased sensitivity to sunlight and other sources of ultraviolet (UV) light, sometimes causing a rash or other skin reaction. On PatientsLikeMe, thousands of people with lupus say they’ve experienced photosensitivity – more than

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