From Diagnosis to Empowerment: Life with Amyloidosis

Sarah, a MedicAlert member since 1984, didn’t have time for a cold, much less life with amyloidosis– – a rare, life-threatening disease. She was too busy raising two kids and working as an executive at an advertising and marketing firm to face a diagnosis of primary amyloidosis.

Doctors were baffled. Sarah was too young for this, and she felt fine. Did she really have to deal with this now. But her doctors insisted that she take action – life with amyloidosis – couldn’t wait. The disease would shut down her kidneys.

According to the Mayo Clinic, amyloidosis is caused by a buildup of amyloid, an abnormal protein produced in the bone marrow. Left uncontrolled, amyloidosis can lead to organ failure. There’s no cure, but the symptoms can be managed. Some treatments can help limit the production of amyloid.

“I was in complete denial,” Sarah says. She contacted another nephrologist for a second opinion, but it was the same as the first. Her doctor even suggested she take disability leave from work. It was enough to shake Sarah out of her denial.

“I had to take this seriously,” she realized.

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Sarah's treatment plan

Sarah pursued treatment with the same drive she had shown in her career. She had numerous tests at Sloan-Kettering Hospital in New York, including painful bone-marrow biopsies. Her health team recommended a stem-cell transplant that would essentially replace her immune system. For three months, Sarah lived on a special, sterile floor at the hospital, receiving injections and waiting for new cells to grow.

With all the stress and changes to her body, new problems emerged. Earlier in life, Sarah had been diagnosed with Crohn’s disease, which causes inflammation in the gastrointestinal tract. Although it had been dormant, it flared up in the hospital. Running to the bathroom 30 times a day and barely being able to eat, Sarah watched her weight plummet to 80 pounds. Her hair fell out when her original white blood cells were destroyed. Sarah’s mental health and self-image declined.

If I am in a car accident, or if I fall, I know my MedicAlert is the key to keeping me well. Any emergency responder will see my medical ID bracelet and wallet card, and they know that they need to call the Emergency Response Team at MedicAlert before doing anything.”

Staying positive

“I had brought notebooks and sketchbooks and journals and things to read,” she says. But when she didn’t know if she would live, or for how long, her old hobbies didn’t seem to matter anymore. She had a degree in design from Carnegie Mellon University, and had worked for 30 years in the advertising industry. By losing her creative inspiration, Sarah felt like she was losing herself.

“You just don’t want to do anything, you can’t focus, you become a skeleton of yourself,” she said of the transplant and recovery process. “life with amyloidosis meant I didn’t even know who I was.”

When she finally left the hospital, Sarah had to wear a gown, mask, and gloves to protect her new, immature immune system. Even at home, life couldn’t go back to normal. For several more months, she couldn’t leave the house. Anything Sarah ate had to be prepackaged or frozen. She could not even pet her family’s Siamese cat.

Later, she heard more discouraging news: the stem-cell transplant didn’t work. Sarah started chemotherapy every other day for six months. She entered therapy three days a week and developed a dependence on antidepressants and pain medication.

Facts About

About 4,000 people in the United States develop amyloid and light chain (AL) amyloidosis each year.

Hereditary and autoimmune amyloidosis (AA) are less common than AL amyloidosis.

Typically diagnosed between the ages of 50 and 65. However, people as young as 20 have also been diagnosed with AL amyloidosis.

Depressed and discouraged, Sarah didn’t even want to leave her house except for appointments. It took almost two years before she went outside for anything fun. She had a limited diet and activities, but at least she could still use her smartphone. As she left the house more often, she used this phone to experiment with photography.

Bringing back her passion for art

“At one point, I just willed myself to start drawing from the photographs I had taken,” she said. This gradually brought back the creative passion she used to know. She began to keep a journal and to work with watercolors and ink. “The creative side of my personality was beginning to come back.”

Once her old self blossomed again, Sarah channeled her determination into her art projects. She does advertising freelance work, marketing consulting, and mentoring. She takes medication for her Crohn’s disease, and her amyloidosis is now considered in remission. She can leave the house without her mask and gloves, and her social life is active again.

She credits not only her creative outlets, the support of close friends and her family, but also her MedicAlert ID with helping her adjust and thrive in her “new normal.”

Because she had a stem-cell transplant, Sarah has to receive irradiated blood if she ever needs a blood transfusion. For her safety, Sloan-Kettering required her to get a MedicAlert ID for amyloidosis. She wears a silver medical ID bracelet that reads “Irradiated blood” and carries a card with contact information and her MedicAlert ID number, in case of emergencies.

Life with amyloidosis meant the the only way I could leave my house was with my MedicAlert ID” she explains. The protection of her MedicAlert bracelet allows her to attend gallery shows, meet with friends, and find

inspiration in her surroundings. “If I am in a car accident, or if I fall, I know my MedicAlert ID is the key to keeping me well. Any emergency responder will see my medical ID bracelet and wallet card, and they know that they need to call the Emergency Response Team at MedicAlert before doing anything.”

“I still wear the bracelet,” Sarah says. “Now it’s more like I’m proud to wear it, like a badge of courage. It gives me a sense of security.”

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