A mom of one has spoken to Newsweek about life with Addison's disease, which recently contributed to the death of TikTok star Taylor Rousseau Grigg.
Laura Bates, 44, was diagnosed with the rare condition nearly two decades ago. The adrenal glands of people with Addison's disease don't produce enough of the steroid hormones cortisol and aldosterone, causing symptoms like fatigue, gastrointestinal issues and low blood pressure.
Approximately 1 in 100,000 people in the United States have the condition, according to The National Organization for Rare Disorders, yet many are unfamiliar with it. Google searches for the disease spiked dramatically after Grigg's cause of death was released on October 10.
Bates shared her experience of Addison's—which can progress slowly or rapidly, often due to the immune system attacking the adrenal glands—and her sympathy for Grigg.
"The recent death of Taylor Rousseau Grigg is so tragic and highlights exactly the severity of the impact this disease can have on a patient and their family," Bates said.
"Her asthma was clearly a contributing factor and, unfortunately, with autoimmune conditions, people do seem to have more than one. Any flare-up of my other condition, Behcet's disease, will ultimately lead to Addison's complications, so life becomes a continuous juggling act."
Grigg reportedly died after suffering complications from asthma and Addison's disease. On October 5, Grigg's husband Cameron shared the news of her death on Instagram, writing, "No one ever expects to have to deal with this kind of pain and heartache, especially at our age. This past year, Taylor has dealt with more pain and suffering than most people do in a lifetime."
The difficult-to-diagnose disease can be problematic for those living with it as the adrenal glands don't produce enough hormones, particularly cortisol, which is vital for life. The National Institute of Diabetes and Digestive and Kidney Diseases states it can also affect some people's diet as they may require a high-sodium diet. Those taking medication to replace cortisol also need sufficient amounts of calcium and vitamin D. A health care professional or dietitian can provide guidance on the appropriate intake levels.
Bates, the co-director of Ink & Ivy PR, said, "If the body does not produce cortisol during times of illness, injury or emotional stress, it will eventually go into shock, causing organ failure and cardiac arrest.
"My main symptoms were extreme, bone-aching tiredness, weakness, unintentional weight loss, thirst, salt craving, dizziness and low blood pressure. Later, I noticed discolored patches of skin, particularly on my legs. This is known as 'the Addison's tan.'"
Bates, who lives in Norfolk, England, was diagnosed in the early 2000s and has been on hormone replacement ever since, but she emphasizes that it is not a complete fix.
She has to be cautious about raising her cortisol levels, noting that a sickness bug or common cold has hospitalized her more than once.
"Addison's is by far the more difficult of my conditions to manage. From a medication point of view it is fairly simple, I replace the cortisol my body would produce via tablets or, in times of crisis, a hydrocortisone injection. I have to carry this with me at all times and was trained in how to use it. The issue is getting to understand what will impact my health and body and when I need to increase my dose of cortisol.
"I have had to learn when I need extra cortisol coverage and adapt my life to make sure I don't put myself into unnecessarily dangerous situations which would cause illness or injury, so skiing is out," she said.
The single mom has developed coping strategies for emotional stress and daily life. However, because life is unpredictable, there are times when an increased dosage or injections are necessary.
"Addison's is treatable and manageable but also dangerously quick to cause severe illness and even death. I can't afford to ever miss a dose of medication or not have an emergency injection on me," she said.
"Addison's won't stop me living a full life though. If John F. Kennedy can be a president with the condition, then anything must be possible. It is just heartbreaking that Taylor Rousseau Grigg won't get to now fulfill her potential as a result of this disease."
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