TikTok star Taylor Russo Grigg has died of Addison's disease. What is it?

We asked endocrinologists about the condition and its symptoms, causes and treatments.

Our body has two adrenal glands, which sit above each kidney and produce many hormones, the most important of which are cortisol and aldosterone. Cortisol, the body's primary stress hormone, helps maintain sufficient glucose in our blood, which is essential for brain function. Aldosterone protects the body from loss of sodium, a mineral needed to maintain blood pressure and volume.

According to the National Adrenal Diseases Foundation, Addison's disease, also known as primary adrenal insufficiency, is “a rare disorder in which the adrenal glands are partially or completely destroyed,” and Cortisol and aldosterone cannot be produced or the glands produce less of them. This results in glucocorticoid and mineralocorticoid deficiency.

“This is a serious, potentially life-threatening disease,” says Paul Margulies, an endocrinologist and medical director of the National Adrenal Diseases Foundation. “It usually comes on fairly slowly over weeks, months, even years as the immune system attacks the adrenal glands. But sometimes it can happen much, much faster and over a period of months.”

Thomas Edison, an English physician and researcher, first described the disease in 1855.

President John F. Kennedy had Addison's disease, doctors who treated him and examined his body after his death told JAMA, according to the publication.

Addison's disease is, in many cases, an autoimmune condition. But the diagnosis can be used as an “umbrella term” to refer to different forms of adrenal insufficiency, says Tony P. Heaney, an endocrinologist at UCLA Health and a professor at the University of California David Geffen School of Medicine. Los Angeles.

In autoimmune disorders, “for reasons we don't understand, the body recognizes some of the healthy proteins in the adrenal gland as foreign,” Heaney said. “It creates antibodies and over time, basically, destroys both adrenal glands.”

But other causes of damage to the adrenal glands, such as cancer, trauma, surgery or infection, can also lead to Addison's disease, Margulis says.

According to a 2022 review, at least 35 to 40 percent of autoimmune-caused Addison's disease can be attributed to genetic changes.

Autoimmune diseases, including Addison's disease, are more common in women, Heaney said.

Addison's disease has many symptoms, 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 often overlooked because its symptoms are shared by many other diseases, experts say. National Adrenal Diseases Foundation Board of Directors Vice President Erin A. Many patients take months or years to be diagnosed, Foley-Mowdry said. 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-Mowdry said.

“There may be some clues,” Heaney said. But “it can have an insidious onset.”

In some of his videos, Rousseau Grieg talks about the challenges of his condition, such as a video where he says he is unable to carry a suitcase up a flight of stairs. It's common for people with Addison's disease to feel tired or weak, Foley-Mowdry said, which is partly because the disease causes low blood pressure.

“It's a weakness that I can't even explain,” Foley-Mowdry said. In the past, her symptoms were so bad that she could not stand up on her own or lift a jug of milk. “I could have died. I could have been one of the unlucky ones like Taylor who didn't make it,” he said.

Foley-Mowdry says it's important to raise awareness among doctors and patients about Addison's disease, its symptoms and how to properly treat it.

Some patients with adrenal insufficiency are diagnosed after suffering adrenal crisis. Episodes in which patients' blood pressure crashes are called crises, and they can be so severe that patients go into a coma or die from shock, says Susan Samson, an endocrinologist and president of the American Association of Clinical Oncologists. Endocrinology.

Other symptoms that a person with Addison's disease may experience include extreme lethargy, nausea, vomiting, weakness, severe abdominal pain, and pain. “As it gets more severe, they can become more confused,” Samson said.

These crises can be caused by patients not getting the right amount of hormones they need or can be triggered by stress because the body naturally needs and produces excess cortisol in stressful situations, Samson said.

There is no known cure for Addison's disease. Samson said patients are treated with hormone replacement therapy to make sure the hormone is missing.

This hormone can be given orally or by injection, he said. Patients have to take them for life.

“Most patients will find a good balance with those medications,” he said. “It sometimes takes time to find the exact right dose for each patient. Every patient is different.”

Patients are usually given hydrocortisone, which is taken twice a day — first in the morning and then at lunchtime or midday, 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 take extra doses of hydrocortisone, for example, when they expect their bodies to be under extra stress.

But not giving patients the right dose can lead to complications and side effects, Samson said. If patients receive too high levels of replacement hormones, “they can have side effects from the medication. For example, taking too many steroids can lead to 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” if they have a sudden infection. And endocrinologists say they ask their patients to wear medical alert bracelets or carry cards that explain the disease so they can get treatment quickly if they get sick.

“It's a burden. It's definitely a nuisance,” Heaney says. “But it's possible to live a full, healthy, normal life. But you have to take your medicine.”

Rousseau Grieg had both asthma and Addison's disease, which may be connected, experts said.

Asthma is not a known cause of Addison's disease, but Samson said he believes there may be a link between asthma and inflammatory diseases like 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 take steroids too often, you can actually atrophy the glands, so they don't work anymore,” he said. “Patients who frequently take steroids for asthma or other immune problems may also develop problems with the production of cortisol from the adrenal glands.”

Addison's disease can be fatal if left untreated, experts say. “There's always the risk of an adrenal crisis that isn't treated in time,” says Samson.

Madeleine Fassen, M.D., an endocrinologist at the Mayo Clinic Health System in La Crosse, Wis., says doctors work with patients with Addison's disease to avoid adrenal crisis with a plan to adjust their steroid medication when needed.

“You can definitely live a long and healthy life with adrenal insufficiency,” Fassen said. “As long as you keep up to date with your friendly neighborhood endocrinologist.”