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.
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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.
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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:
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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:
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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:
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
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Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
