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IgA Nephropathy (IgAN)

Maria M.

Adults

Starting around 2016, Maria was not able to sleep well, not able to lose weight and she would “swell” from time to time; Maria complained about menopause as the culprit. In January of 2019, she saw a gynecologist regarding menopause and then a primary care physician because her labs had come back with concerning results; Maria’s blood pressure was abnormally high and her cholesterol was over 300, among other things. By June of 2020, though she was taking blood pressure and cholesterol medications, her labs were worse. Thus, Maria saw a nephrologist who ordered a biopsy which resulted in her IGAN diagnosis. It was then that she was told that she had an auto-immune disease and that this would be a life-long situation until she needed dialysis or a transplant; her medications were adjusted, and Maria was sent on her way with only monthly visits and labs to follow.

In March of 2021, her labs continued to worsen, and she was prescribed high dose steroids. Maria spent three months taking 60mg of prednisone daily, followed by three months of 40 mg daily, followed by 2 months of 20mg and then a quick taper until she stopped taking it on Thanksgiving of 2021. Maria went to Mayo Clinic in July of 2021 and the medical team supported the treatment plan by my local doctors. She changed her diet, even though her doctors informed her that it wouldn’t matter since it was an autoimmune disease. Maria suffered a great deal during those 9 months, but nothing was worse than losing most of her hair between the taper and the end of 2021…

Maria’s newfound obsession with her medical condition led her to NephCure and the 2022 Patient Summit in Orlando, FL. It was amazing for her to find people who understood her situation and to learn even more things about what Maria could be doing and how to advocate for herself regarding her medical team.

Maria’s newfound obsession with her medical condition led her to NephCure and the 2022 Patient Summit in Orlando, FL. It was amazing for her to find people who understood her situation and to learn even more things about what Maria could be doing and how to advocate for herself regarding her medical team. She has a good support system at home inclusive of her husband, adult children, parents, and lifelong girlfriends; however, it was finding other RKD peers that really made her feel understood, seen and ultimately gave her hope. Maria talked to legislators during the Virtual Hill Day in July of 2022 on behalf of NephCure and continues to email her representatives to assist in improving healthcare for RKD patients. The biggest change was that she started seeing a new nephrologist in August of 2022.

This past year has seen Maria’s hair grow again; her labs have been relatively stable, but she remains in Stage 4 regarding her renal disease. Maria continues to struggle to drink enough water and consume an adequate number of fruits and vegetables. Thus, she recognizes that there remains room for improvement. However, Maria is greatly looking forward to the Patient Summit in San Diego so that she may regain her momentum and gather new ideas for lifestyle changes to help with her health.

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IgA Nephropathy (IgAN)

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