Singer Halsey was diagnosed with lupus and a rare T-cell lymphoproliferative disorder
Key Takeaways
Singer Halsey recently shared on Instagram that she was diagnosed with lupus and a T-cell lymphoproliferative disorder.
Lupus is an autoimmune disease marked by inflammation of multiple organs and systems, including the kidneys. In recent years, several celebrities have shared their experiences with lupus, leading to increased public awareness.
Lymphoproliferative disorders are not as well known, experts say. They’re caused by uncontrolled production of T-cell and B-cell lymphocytes. In Halsey’s case, T-cell lymphomas are a form of non-Hodgkin’s lymphoma, requiring different forms of treatment according to subtype. These can include moderate or aggressive chemotherapy regimens or bone marrow transplants.
Singer-songwriter Halsey revealed in a June 4 Instagram post that she was “[l]ucky to be alive” after being diagnosed in 2022 with both systemic lupus erythematosus (SLE) and a rare T-cell lymphoproliferative disorder. Halsey says that both diseases are in remission or being managed.
“After a rocky start, I slowly got everything under control with the help of amazing doctors. After 2 years, I’m feeling better and I’m more grateful than ever to have music to turn to,” Halsey wrote. They also tagged both the Leukemia & Lymphoma Society and the Lupus Research Alliance in her Instagram post, bringing public awareness to the diseases.
“Their candor elevates the conversation to shine a spotlight on a serious autoimmune disease that is often overlooked and misdiagnosed…The Lupus Research Alliance commends Halsey’s courage in using their platform to raise awareness and support for much-needed research to find new treatments and diagnostics for a disease that affects each person differently,” the Lupus Research Alliance stated in a press release.[]
A news report from 2022 says that Halsey was also diagnosed with “Ehlers-Danlos syndrome, Sjogren's syndrome, mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS).”[] Additionally, Halsey has been open about their journey with endometriosis.[]
A closer look at SLE and T-cell lymphoproliferative disorders
SLE, the most common form of lupus, is an autoimmune disease marked by inflammation of multiple organs and systems, including the nervous system, heart, and kidneys, among others.[] Symptoms may include joint swelling and pain, fatigue, fever, and swelling in the feet and around the eyes.[] Additionally, about 50% of patients with SLE will develop a malar rash—a butterfly shaped rash across the cheeks and nose. SLE shares crossover symptoms with other autoimmune diseases, making it tricky to accurately diagnose.
Halsey isn’t the first celebrity to share a lupus diagnosis with the public. Singer and actor Selena Gomez has also been open about her lupus journey, including pain, myositis, and a 2017 kidney transplant.[][] Other celebrities who have spoken out about lupus include Seal and Nick Canon.[]
While the conversation around lupus awareness has continued to grow, lymphoproliferative disorders (LPDs) are less understood. In fact, these disorders can be downright confusing to patients, explains Ryan Wilcox, MD, PhD, Associate Professor in the Department of Internal Medicine and Section Head of Lymphoma & Myeloma at the University of Michigan.
LPDs are a group of diseases; they often affect patients who are already immunocompromised and are “characterized by uncontrolled production of lymphocytes that cause monoclonal lymphocytosis, lymphadenopathy and bone marrow infiltration,” according to StatPearls.[] The two subsets of lymphocytes include T and B cells. These cells regenerate uncontrollably, leading to the development of immunoproliferative disorders.
In Halsey’s case, T-cell lymphomas (TCL) are a form of non-Hodgkin lymphoma (NHL). These lymphomas develop inside lymphoid tissues—like the lymph nodes and spleen—or outside of lymphoid tissues, in the gastrointestinal tract, liver, nasal cavity, skin, or other areas.[]
“The non-Hodgkin lymphomas are a group of cancers derived from the cells of the immune system. Most NHL are derived from immune cells called B-cells. A minority (10% to 15% in the United States) are derived from T-cells,” Dr. Wilcox says.
“The TCL are also a hodgepodge of different lymphomas. I like to use ice cream as an analogy with patients. Saying ‘T-cell lymphoma’ is a bit like saying, ‘I had ice cream last night.’ Well, what does that mean?...Much like ice cream, T-cell lymphomas also come in different flavors. The ‘flavor’ matters, as T-cell lymphomas are treated differently,” Dr. Wilcox explains.
The subtypes of T-cell lymphomas include Sezary syndrome, T-cell prolymphocytic leukemia, adult T-cell leukemia-lymphoma, and large granulated lymphocyte leukemia, which can be very aggressive or slow-growing. [][]
“Many patients are ‘sick’ at the time of diagnosis, while others may feel well,” Dr. Wilcox explains. “The clinical presentation can vary from TCL subtype to subtype. Many patients present with an enlarged lymph node. Others may present with TCL involvement of other sites—the skin, nose/sinuses, bone marrow/peripheral blood, etc—while others present with complications related to the TCL, like low blood counts, high calcium, fever, and drenching night sweats.”
Some subtypes, Dr. Wilcox says, require treatment with moderate-intensity chemotherapy regimens, while others may require treatment with more aggressive chemotherapy regimens—up to and including bone marrow transplant.
A TLC diagnosis can be tricky to pin down, posing challenges for hematopathologists. “In fact, approximately one in three biopsy specimens reviewed by a community pathologist will be reclassified upon review by an ‘expert’ hematopathologist with experience diagnosing/classifying the TCL,” Dr Wilcox says. This is critical, since TLC reclassification may lead to necessary treatment changes.
“For this reason, we always retrieve external biopsy material for review by our hematopathologists when seeing patients who have been referred for a TCL at our institution,” Dr. Wilcox adds. Patients who are diagnosed should be referred to a medical oncologist with specific experience managing the TCL, he adds.
“Unfortunately, outcomes for many TCL subtypes are suboptimal, and some are downright dismal. Therefore, clinical trial participation is an important consideration for many patients,” Dr. Wilcox says. These kinds of trials are more widely available at academic institutions where oncologists who have specific experience managing these types of lymphomas are present, he notes.
What this means for you If you suspect that a patient has T-cell lymphoma, referral to an oncologist with specific experience in this area is key. For healthcare providers who suspect that a patient has lupus, there is no one single test to determine the disease; however, tests can include complete blood counts, antibody tests, blood clotting time tests, and biopsies.[]