TikTok star Taylor Rousseau Grigg, 25, died of “complications from asthma and Addison’s disease,” a representative for her family told Today.com on Thursday. Rousseau Grigg’s death was announced by her husband, Cameron Grigg, on Saturday in an Instagram post, calling it “sudden and unexpected.”
We asked endocrinologists about the condition and its symptoms, causes and treatment.
What is Addison’s disease?
Our bodies have two adrenal glands, which sit atop each kidney and produce many hormones, of which the most important are cortisol and aldosterone. Cortisol, the body’s primary stress hormone, helps maintain enough glucose, which is needed for brain function, in our blood. Aldosterone guards the body against loss of sodium, a mineral necessary to maintain blood pressure and volume.
Addison’s disease, also known as primary adrenal insufficiency, “is a rare disorder in which the adrenal glands are partially or completely destroyed,” according to the National Adrenal Diseases Foundation, and cannot produce cortisol and aldosterone or the glands produce low amounts of them. This results in glucocorticoid and mineralocorticoid deficiency.
“This is a serious, potentially life-threatening disease,” said Paul Margulies, an endocrinologist and medical director for the National Adrenal Diseases Foundation. “It typically comes on fairly slowly over the course of weeks, months, even years as the immune system injures the adrenal glands. But sometimes it can be much, much faster and occur in a few months.”
Thomas Addison, an English physician and researcher, first described the disease in 1855.
President John F. Kennedy had Addison’s disease, physicians who treated him and examined his body after his death told JAMA, according to the publication.
What are the causes of Addison’s disease?
Addison’s disease, in many cases, is an autoimmune condition. But the diagnosis can be used as an “umbrella term” to refer to many different forms of adrenal gland deficiency, said Tony P. Heaney, an endocrinologist at UCLA Health and a professor at the David Geffen School of Medicine at the University of California at Los Angeles.
In the autoimmune disorder, “for reasons that we don’t understand, the body identifies some of the healthy proteins in the adrenal gland as foreign,” Heaney said. “It makes antibodies and, over time, essentially, destroys both adrenal glands.”
But other causes of damage to adrenal glands, such as cancer, injury, surgery or infection can also result in Addison’s disease, Margulies said.
At least 35 to 40 percent of autoimmune-caused Addison’s disease can be attributed to genetic variation, according to a 2022 review.
Autoimmune diseases, including Addison’s disease, are more common in women, Heaney said.
What are the symptoms and how is Addison’s disease diagnosed?
There are many symptoms of Addison’s disease, including weakness, skin hyperpigmentation, vomiting, diarrhea, weight loss, fever, fatigue, brain fog, depression and anxiety, according to studies.
Addison’s disease is challenging to diagnose and is often overlooked because its symptoms are shared by many other diseases, experts said. Many patients take months or years to get diagnosed, said Erin A. Foley-Moudry, co-president of the National Adrenal Diseases Foundation’s board of directors. Foley has Addison’s disease.
“I’ve lived with Addison’s disease, also known as adrenal insufficiency, for over 30 years, and it’s a very difficult disease to diagnose,” Foley-Moudry said.
“There can be some clues,” Heaney said. But “it can have an insidious onset.”
In some of her videos, Rousseau Grigg spoke about the challenges of her condition, such as a video in which she said she was not able to carry a suitcase up the stairs. Feeling fatigued or weak is very common for people with Addison’s disease, Foley-Moudry said, which is partly because the disease causes low blood pressure.
“It’s a weakness that I can’t even explain,” Foley-Moudry said. In the past, her symptoms have been so bad that she was not able to stand up on her own or even lift a pitcher of milk. “I could have died. I could have been one of the unfortunate ones like Taylor that didn’t make it through,” she said.
Foley-Moudry said that it’s critical to raise awareness among doctors and patients about Addison’s disease, its symptoms and how to appropriately treat it.
Some patients with adrenal insufficiency are diagnosed after they suffer from an adrenal crisis. Episodes in which patients’ blood pressure crashes down are known as crises, and they can be so severe that they cause patients to go into a shock, enter a coma or die, said Susan Samson, an endocrinologist and president of the American Association of Clinical Endocrinology.
Other signs that someone with Addison’s disease is in crisis include extreme lethargy, nausea, vomiting, weakness, extreme abdominal pain and achiness. “As it gets more severe, they may become more confused,” Samson said.
These crises can be caused by patients not getting the right amount of the hormones they need or can be triggered by stress because the body normally needs and produces extra cortisol during stressful situations, Samson said.
What are the treatments for Addison’s disease?
Addison’s disease has no known cure. It is treated with hormone replacement therapy to ensure that patients get the hormones their body is lacking, Samson said.
These hormones can be given orally or through an injection, she said. Patients have to take them for the rest of their lives.
“Most patients will find a good balance with those medications,” she said. “It takes time sometimes to find the exact right dosing for every patient. Every patient is different.”
Patients are usually given hydrocortisone, which is taken twice a day — first thing in the morning and then around lunchtime or midafternoon, Heaney said. As well as fludrocortisone to replace the missing aldosterone in the body. And Heaney said he works with patients to help them understand when they can possibly take an extra dose of hydrocortisone, for example, when they expect their body to be under additional stress.
But there can be complications and side effects if patients are not on a correct dose, Samson said. If patients get too high a dose of replacement hormones, “they can have side effects from the medications. For example, just having too much of steroids can cause a metabolic syndrome, weight gain and … Cushing’s syndrome, which is the opposite, where you have too much cortisol.”
Heaney said patients with Addison’s disease can deteriorate “very quickly” when they get a sudden infection. And endocrinologists say they tell their patients to wear medical alert bracelets or carry cards that explain the disease so they can be treated quickly if they become ill.
“It is a burden. It’s a nuisance, for sure,” Heaney said. “But it is possible to live a full, healthy, normal life. But you do have to take your medications.”
How are asthma and Addison’s disease connected?
Rousseau Grigg had both asthma and Addison’s disease, which can be connected, experts said.
Asthma is not a known cause of Addison’s disease, but Samson said she believes there could be a connection between inflammatory diseases such as asthma and Addison’s disease, because one way to treat inflammatory diseases is to use steroids — but steroids also suppress the body’s adrenal glands temporarily.
“If you’re on steroids quite frequently, you can actually atrophy the glands, so they don’t work anymore,” she said. “Patients who are on frequent steroids for asthma or other immune causes can also develop issues with cortisol production from the adrenal gland.”
Is Addison’s disease fatal?
If left untreated, Addison’s disease can be fatal, experts said. “There’s always the danger of having an adrenal crisis that cannot be treated in a timely fashion,” Samson said.
Physicians work with patients who have Addison’s disease on all the ways to avoid an adrenal crisis, including a plan to adjust their steroid medication when needed, said Madeline Fasen, an endocrinologist at Mayo Clinic Health System in La Crosse, Wis.
“You can definitely live a long and healthy life with adrenal insufficiency,” Fasen said. “As long as you keep up to date with your friendly neighborhood endocrinologist.”
