A mother of one has spoken Newsweek about living 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 almost two decades ago. The adrenal glands of people with Addison’s disease do not produce enough of the steroid hormones cortisol and aldosterone, causing symptoms such as fatigue, gastrointestinal problems and low blood pressure.

According to the National Organization for Rare Disorders, about 1 in 100,000 people in the United States have the condition, but many are unfamiliar with it. Google searches for the disease increased dramatically after Grigg’s cause of death was released on October 10.

Bates shared her experiences with Addison’s disease – which can develop slowly or quickly, often because the immune system attacks 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 clearly played a role and unfortunately with autoimmune diseases people seem to have more than one. Any flare-up of my other condition, Behcet’s disease, will eventually lead to Addison’s complications so life becomes a constant juggle .” action.”

Grigg reportedly died after 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. Over the past year, Taylor has dealt with more pain. and then most people suffer in their entire lives.”

The difficult-to-diagnose disease can be problematic for those living with it because the adrenal glands do not produce enough hormones, especially cortisol, which is vital for life. The National Institute of Diabetes and Digestive and Kidney Diseases states that it may also affect the diet of some people, as they may need a diet high in sodium. Those taking medications to replace cortisol also need adequate amounts of calcium and vitamin D. A healthcare professional or dietitian can provide advice on 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, painful fatigue, weakness, unintentional weight loss, thirst, salt cravings, dizziness and low blood pressure. Later I noticed discolored patches of skin, especially on my legs. This is known as ‘Addison’s disease ‘.tan.'”

Bates, who lives in Norfolk, England, was diagnosed in the early 2000s and has been on hormone replacement since then, but she emphasizes that it is not a complete solution.

She needs to be careful about raising her cortisol levels, noting that an illness or cold has hospitalized her more than once.

“Addison’s disease is by far the most difficult of my conditions to deal with. From a medication point of view it’s quite simple: I replace the cortisol my body would produce via tablets or, in times of crisis, an injection of hydrocortisone. I have to this always happens to me and I am trained in how to use it. The problem is understanding what the impact will be on my health and body and when to increase my cortisol dose.

“I’ve had to learn when I need extra cortisol coverage and adjust my life to ensure I don’t put myself in unnecessarily dangerous situations that would cause illness or injury, so skiing is out,” she said.

The single mother has developed coping strategies for emotional stress and daily life. However, because life is unpredictable, there are times when increased dosage or injections are necessary.

“Addison’s disease is treatable, but it can also cause serious illness and even death dangerously quickly. I can’t afford to ever miss a dose of medication or not have an emergency injection with me,” she said.

“However, Addison’s disease will not stop me from living a full life. If John F. Kennedy can be a president with the condition, then anything must be possible. It’s just heartbreaking that Taylor Rousseau Grigg won’t be able to fulfill her potential now. a consequence of this disease.”

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