TikTok star Taylor Rousseau Grigg died after complications from Addison's disease, family says. What to know about the rare condition.
TikToker Taylor Rousseau Grigg died at just 25 of complications of Addison’s disease and asthma, her family told Today.com. Rousseau Grigg’s death last week was “sudden and unexpected,” her husband, Cameron Grigg, said in an Oct. 5 Instagram post.
The young TikToker had risen to prominence posting about her life. She shared that she’d received a diagnosis in an Aug. 8 “health update” but didn’t specify what her condition was. Experts say that Addison’s disease is rare but can quickly become life-threatening if it’s not managed properly.
Here’s what to know about the condition.
What is Addison’s disease?
Addison’s disease is an autoimmune condition — affecting about one in 100,000 people — in which the body attacks its organs, specifically the adrenal glands. It’s also called primary adrenal insufficiency because the condition causes a person’s adrenal glands to produce too little of two key hormones. “The most important is the hormone cortisol — you can’t survive without cortisol,” Dr. Anne Cappola, an endocrinologist with Penn Medicine, tells Yahoo Life.
Cortisol is often referred to as the “stress hormone,” and its levels do rise as part of the “fight or flight” response when we’re in real danger or otherwise distressed. But it plays a vital role in our bodies. “Cortisol is an important hormone for blood pressure, so if you don’t have enough of it, you can get into an adrenal crisis and die,” explains Cappola. But, she adds, the body has a lot of “redundancy” when it comes to cortisol. We have two adrenal glands — as well as other cells — that produce cortisol, and we could get by with the amount of the hormone produced by one, in most cases. That’s why Addison’s disease symptoms may emerge slowly over time.
What are the symptoms?
Addison’s disease manifests with a “constellation” of symptoms, Dr. Theodore Friedman, an endocrinologist and chair of the department of internal medicine at Charles R. Drew University, tells Yahoo Life. Those include fatigue, weight loss, nausea, diarrhea, abdominal pain, joint or muscle pain, dehydration, low blood sugar and cravings for salty food. It can also cause hyperpigmentation, or a darkening of the skin that can make people appear bronzed.
Rousseau Griggs said in her August health update that she was at times “in bed writhing in pain” and felt too weak to carry a suitcase or walk to the mailbox. She added that she had found out what was ailing her only a few months prior and was “struggling that whole time, feeling like I was going to die.”
While the symptoms tend to develop slowly over time, they can worsen quickly in some cases, Friedman says. “You can be healthy one day and sick the day after,” he explains. “It can happen really fast.” Most people are diagnosed between the ages of 20 and 50 as the condition’s chronic effects accumulate, according to the Cleveland Clinic.
Addison's disease is treatable with steroids
Cappola and Friedman tell Yahoo Life that people with Addison’s usually have to take one or two medications to replace the hormones their body is underproducing: hydrocortisone, a steroid that supplements cortisol, and fludrocortisone, to replace a second hormone called aldosterone. The latter helps keep the body’s water and salt levels balanced, the Cleveland Clinic says, so people with Addison’s may need to consume more sodium when they’re exercising.
When taking these steroids properly — hydrocortisone has to be taken in varying doses sometimes, between two and four times a day, Friedman says — a patient with Addison’s can live a relatively normal life.
How Addison's can turn fatal
The disease has to be carefully managed. The body needs cortisol at all times, “but you particularly need cortisol in times of physical stress,” explains Cappola. The body’s cortisol demands can fluctuate drastically throughout the day and “spike up in times of stress, like an infection.”
That’s particularly dangerous when a patient’s body is trying to fight off a cold or other illness. “An infection causes you to chew through [your steroids], then you can’t fight the infection anymore,” explains Friedman. People with Addison’s need an extra dose of cortisol, often in injection form, during these times because their bodies won’t make enough to meet the demand on their own.
The biggest concern, however, is that the drop in cortisol triggers adrenal crisis, and when there isn’t enough of the hormone, “the main thing you’d see is that blood pressure would start to drop, and if your blood pressure isn’t high enough for a long time, you can die from it,” says Cappola.
While it’s not clear what exactly happened to Rousseau Grigg, both experts say that a combination of adrenal crisis from Addison’s and asthma could become deadly. “The asthma attack itself might not be it,” says Cappola. “But she might’ve had some kind of upper respiratory infection that precipitated an asthma attack and precipitated adrenal crisis. You can die from either one.”
Cappola points out that being newly diagnosed could mean that Rousseau Griggs was less prepared to understand what was happening or how to manage it. She adds that the drop in blood pressure during adrenal crisis could have impaired judgment and made it harder to get help or more medication in time.
Addison's is rare — but health problems related to steroids aren't
Both experts say that unless a patient has had ongoing symptoms (which would warrant a doctor’s visit), Addison’s is a rare diagnosis that most people likely don’t need to worry about. “What should reassure you is that the body has a lot of built-in duplication of adrenal tissue that makes these hormones,” says Cappola. “It really takes a chronic destructive process to get to the point where someone develops these symptoms.”
While corticosteroids like hydrocortisone and prednisone are helpful for people with Addison's, Cappola warns people against taking the medications without a doctor's recommendation. “Be careful taking corticosteroids like hydrocortisone or prednisone,” warns Cappola. “There are people out there who think that they have adrenal fatigue and take these [as] supplements, and they shouldn’t; you don’t want to mess with those adrenal glands.” That’s because if you take steroids long term and stop abruptly, your body can go into adrenal crisis, even if you don’t have Addison’s.