Rare Disease Day 2022: This Rare Mom Shares Her IgA Nephropathy Patient Experience on TikTok

Judy was diagnosed at age 45 with the rare disease IgA nephropathy in 2019. The diagnosis changed her life forever. IgA nephropathy is difficult to diagnose until it has progressed, as it initially causes little to no symptoms. Her first sign of the disease was unusually high blood pressure. Judy initially dismissed it as signs of stress from her job at a hotel. A kidney biopsy proved otherwise.

About IgA Nephropathy

IgA nephropathy, which is also known as Berger’s disease or synpharyngitic glomerulonephritis, is a rare disease which affects the immune system and the kidneys. It is characterized by the inflammation of the glomeruli, a network of capillaries found in the kidneys. In severe cases, the skin and liver may also be affected by the disease. The exact cause of IgA nephropathy is not fully understood, but evidence suggests that the immune system probably plays an important role. Symptoms of the disease include blood in the urine, often triggered by an earlier upper respiratory tract infection. Other symptoms include discolored urine, severe flank pain, swelling in the hands and feet, immune system problems, and elevated blood pressure. Kidney failure is possible in the aggressive variant. Treatment may include steroids, cyclophosphamide, and dietary changes. To learn more about IgA nephropathy, click here.

Judy’s Story

Judy’s illness had progressed to the point of stage 3 chronic kidney disease. The diagnosis would transform her life forever and she began to share about her experiences through a written blog that she started and on the social media platform TikTok. Judy lives in a Hawaii, and to this day has never met another IgA nephropathy patient in person.

Judy has around 4000 followers on her TikTok account. Most of them are people living with various forms of chronic illness. A lot of her videos focus on topics such as chronic pain, chronic kidney disease, and her dieting choices, as this has become an important part of how she manages IgA nephropathy:

“The biggest thing that got me started doing it was plant-based dieting. I knew soon after my diagnosis that I had to change how I was eating. Animal protein was going to have be a second thought.” – Judy

Judy ultimately made the choice to go to an entirely plant-based diet:

“As someone who has worked in the food service industry and is married to a chef, it has been the hardest thing for me to do.”

TikTok has allowed herself to meet other patients and many of her latest videos have focused on advocacy and navigating challenges in the healthcare system, which are especially difficult for chronic illness patients. An example was spreading information about prednisone and its side effects, a glucocorticoid widely used in autoimmune diseases.

Judy also shares about the mental health challenges of her diagnosis:

“It’s been hard living with the concept that it’s an untreatable and terrible disease. Until recently, there was no approved treatment…and also having to recognize that it’s not a question of if but of when I go on dialysis. Or even if I do get a transplant, there’s a high chance it will come back.”

The disease has also caused Judy to lose a lot of energy, and she describes her experience as a process of grief that she anticipates lasting for the rest of her life:

“When you live with a chronic illness, you are reminded every day of the person that you will never be again.”

Thankfully, the US Food and Drug Administration (FDA) recently approved a new treatment called budesonide (marketed as TARPEYO) for the disease for patients at risk of rapid disease progression. Judy’s goal for the near future is to live long enough to see her son graduate high school. Any time beyond that will be a bonus.

You check out Judy’s blog here and follow her on TikTok here.

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