Rare diseases and chronic illnesses do not discriminate. They do not care if you are young or old, where you come from, or how much money you make. With an estimated 10,000+ rare diseases in existence, the rare disease community includes more people than you think. We are united in our experiences.
Now, reports Vanessa Etienne in an article for People, the rare community has embraced another new member: Halsey. The singer-songwriter dynamo, whose lyrics seamlessly blend poeticism with haunting melodies and pulsating beats, shared on social media that they were diagnosed with lupus and a rare T-cell lymphoproliferative disorder in 2022. In “The End,” a song from Halsey’s new album, the singer shares:
“Every couple of years now, a doctor says I’m sick, pulls out a brand-new bag of tricks and then they lay it on me. At first it was my brain, then a skeleton in pain, and I don’t like to complain but I’m saying sorry.”
While fans have speculated on health issues in the past, this is the first point where Halsey has been upfront about the health complications going on behind the scenes. The last two years have marked periods of immense challenge for Halsey; these included treatment and management needed to get the conditions under control.
Halsey has shared that both lupus and the T-cell lymphoproliferative disorder are either well-managed or in remission. At the same time, the singer notes that these are life-long conditions, which means that they could require more care in the future. In the meantime, Halsey feels thankful her health and is excited to get back on tour. Additionally, proceeds from “The End” will be donated to both the Lupus Research Alliance and Leukemia & Lymphoma Society.
What is Lupus?
Sometimes referred to as systemic lupus erythematosus, lupus is a complex and chronic autoimmune disease. Autoimmune diseases occur when the body’s immune system attacks its own tissues or organs, mistaking them for “foreign invaders.” In this case, the immune system can attack and damage organs throughout the body, from the skin and joints to brain, heart, and lungs (among others). Because lupus can impact so many systems and organs, symptoms can vary from person to person. These symptoms often include debilitating fatigue, a butterfly-shaped rash on the face, joint pain and inflammation, fever, dry eyes, confusion, memory loss, headaches, shortness of breath, Raynaud’s phenomenon, and even skin lesions that worsen with sun exposure. People with lupus also have a higher risk of cancer, bone tissue death, infections, and pregnancy-related complications.
Due to its chameleon-esque nature, diagnosing lupus is no easy feat. The diagnostic journey often encompasses chest x-rays, bloodwork, physical history, ANA tests, echocardiograms, kidney and liver assessments, and more. Once lupus is diagnosed, treatment may involve NSAIDs, corticosteroids, biologics, rituximab, antimalarials, or immune suppressing therapies. If you have lupus, please speak with your doctor to identify the best care plan and pathway forward.
