Managing an IgA nephropathy (IgAN) diagnosis, whether it's yours or that of a loved one, can feel incredibly overwhelming, isolating, and just plain difficult. These five content creators living with IgAN are giving hope to the community by sharing their real experiences, tips, and resources to remind you you’re not alone.
Kristin’s journey began on Thanksgiving Day in 2021 when she went into the ER extremely weak, coughing up blood, and short of breath. She was shocked to hear her doctor tell her that she was in kidney failure and that she had almost no blood in her body. Six days later she was diagnosed with IgAN & stage 5 kidney disease. Through all of this, she has decided to share her journey (and her art!) on IG to build a community of patients walking a similar path.
Why you should follow:
- To feel less alone in your IgAN journey, especially if you are awaiting a transplant yourself
- If you’re looking for creative inspiration!
Top Content:
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Gisela was diagnosed with IgA Nephropathy in 1994, at the age of 14. In 2017 she began her journey to find a new kidney, which she nicknamed “Jack”. She finally found “Jack” in February 2019, by way of her brother who was her living donor. She continues to advocate for the IgA Nephropathy community and shares her story on social media.
Why you should follow:
- Conversation surrounding disparities in care for patients of color
- Tips for getting involved in advocacy work
- To feel less alone in your IgAN journey
Top Content:
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In July of 2021, Cristie lost her father during a routine operation and shortly thereafter her creatinine shot up. Her doctor recommended a biopsy and she was officially diagnosed with IgAN. Initially, she was told there was very little chance it would progress. Unfortunately, things rapidly took a turn for the worse and Cristie needed a transplant, which she did receive in 2022. She continues to share her journey on social media post-transplant and is passionate about raising awareness for IgA Nephropathy.
Why you should follow:
- To follow someone’s journey pre and post-transplant journey
Top Content:
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When Judy was diagnosed with IgA Nephropathy she entered a period of grief and was searching for a connection with someone who would understand. She turned to social media to find hope, friendship, and connection. She was able to find a community of patients going through a similar journey.
Why you should follow:
- To be informed about your diagnosis and tips for management
Top Content:
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Stephanie was living with Crohn’s disease when she underwent a kidney biopsy in 2021 that confirmed she had IgA nephropathy. Despite Crohn’s disease and IgA nephropathy she is determined to not let chronic illness slow her down. She started her blog “Crohn’s Fitness Food” in 2017 to raise awareness for both of her conditions and launched an accompanying podcast just two years later.
Why you should follow:
- Tips and tricks for managing your chronic illness
- Fellow IgAN & chronic illness warrior stories
Top Content:
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