My Journey with IgAN: Overcoming Challenges and Finding Support

Sarah You is an IgAN Change Champion who has used her challenges with IgA nephropathy to help others. Sarah was diagnosed with IgAN when she was 21 years old, living as an international student in the US. She flew back to receive treatment and be with her family in Korea following her diagnosis. Now that she understands how to manage her IgAN, she has a master's degree in immunology and is currently applying to medical schools so she can be a support system for other rare disease patients.

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For IgAN-friendly meals head to Sarah’s Instagram @healthkidney_recipe.

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PicnicHealth (PH): What has been the hardest part of your journey, and how have you overcome it?

Sarah You (SY): Living with IgAN can be challenging, both physically and emotionally. I was really scared when I first learned about the condition. I strapped my purse onto my shoulder, keys in hand. I was ready to meet my friends and see the Christmas decorations around town. Suddenly, however, my phone rang. "You need to come into the hospital immediately to discuss your lab result." I was diagnosed with IgA nephropathy, shortening my life span to potentially only five more years. How could I, someone who was only 21 years old, potentially have only five years to live? My mind quickly turned to questions like: “Am I going to die?”

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One of the biggest challenges was managing treatment side effects. Due to the side effects of steroids, I had Cushing's syndrome, which is a rare hormonal disorder that occurs when the body is exposed to high levels of the hormone cortisol for an extended period. Symptoms of Cushing's syndrome include weight gain and skin changes, typically in the face, neck, and upper body. I gained almost 20 pounds in 2 months. Skin becomes thin with easy bruising, stretch marks, and acne. When I looked in the mirror, I kept thinking that “I do not look pretty anymore.” This led me to feelings of low self-esteem, shame, anxiety, depression, and isolation. I cried every night and one day I threw all my medication in the trash can.

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I overcame these challenges by:

1. ‍Surrounding myself with positive, supportive people that included knowledgeable physicians, family, and friends. If anyone tries to hold you back during the treatment journey, run immediately. Living with IgAN is already tough! If I can do it, so can you.
   
   As an international student, it was difficult to carry out the process of treatment in the United States alone without my family, so I returned to Korea in my sophomore year of college. Despite the immense pain I experienced, numerous physicians impressed me with their unwavering commitment to the care of a total stranger. Among all the members of my care team, Dr. Lee stood out. He assuaged my fears at this pivotal moment by assuaging me that my future would be better than predicted. I imagined how gratifying it could be to comfort patients at times of vulnerability. After two months of steroids, facial swelling, nutrition control, and isolation, my protein level drops 8000 mg to 2000 mg which left me constantly contemplating life and death.
   
   After 2 months of steroids, Dr. Lee tried to substitute steroids with other medications since he knows that I struggled a lot with Cushing's syndrome. He advised me to take a nutrition class offered by the hospital and exercise regularly. Following my recovery, I aspired to translate my experience as a patient to others and leave a similar meaningful impression as Dr. Lee did on me.
   
   As for my mental well-being and self-esteem, my parents always remind me I am still pretty and I will get better. Working closely with a healthcare provider is key to managing IgAN effectively. Besides providing diagnoses and treatments, simply being present for someone, taking the time to listen, and attending to their needs could significantly impact their quality of life.
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2. ‍Taking an active role in care. Keep track of how IgA Nephropathy affects your daily life. While there is no cure for IgA Nephropathy at this time, there are steps I can take to manage symptoms and slow the progression of the disease.
   
   I ask my healthcare team questions. As I learned more about the disease, like how to monitor kidney function, control your diet, and certain treatments, the way I handled my symptoms improved.
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3. ‍Helping others along the way.
   
   ‍My health journey led me to help others who also faced uncertainty. I have finished an undergraduate biology major and am eager to know more about my disease. In 2021, I graduated with an immunology master's degree and decided to apply for medical school the following year. This allowed me to understand the value of being a physician and becoming a strong person. My experience as an IgAN patient helped me solidify the impact I hope to have on my future patients. Do not let the disease define you.

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PH: What do you wish you knew about IgAN before your diagnosis?

SY: A lot of people with kidney disease don't even know they have it. Make sure to do annual physical exams! Some people with IgAN may have no symptoms at all, while others may have symptoms such as blood in the urine, protein in the urine, high blood pressure, and swelling in the hands, feet, or face. Although my kidney function was already greatly damaged, I did not complain about any of those symptoms.

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The only way to confirm IgA Nephropathy is with a kidney biopsy. For this procedure, the doctor removes a small piece of kidney tissue and examines it under a microscope. Even if it was a quick procedure, and tiny parts of tissues were taken, I was not able to walk for about a week and I still have pain where I got my biopsy done as a side effect.

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PH: What piece of advice would you give your younger self?

SY: If I could give myself one piece of advice in my early twenties, I would say to stop drinking coffee and energy drinks instead of water, stop eating junk food, and sleep well. It's a shortcut to ruin your health. I thought I was safe and healthy because I was young and had no symptoms. Organ disease is a quiet death race.

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PH: What are some tips or advice that you’d like to share with other patients on how you manage IgAN?

SY: A balanced diet is important for managing the symptoms of IgAN (IgA nephropathy) and supporting kidney function. Since 2019, I started writing a diary to record how much salt and protein I ate, how much exercise I did, how my weight changed, how I felt, and how my blood pressure was, and so on. The most important tip to manage IgAN is to control your diet.

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PH: What lifestyle and diet tips have helped you the most?

SY: Some guidelines I follow are:

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1. ‍Maintain hydration: Drinking water can help with IgAN (IgA nephropathy) by supporting overall kidney function, maintaining healthy blood pressure levels, and promoting hydration. When the body is dehydrated, the kidneys have to work harder to filter waste and toxins from the blood. So drink enough of it and flavor it with fresh mint, cucumber, lemon, or other fruits. I gave up drinking coffee and made an effort to stay away from all caffeinated beverages.
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2. ‍Control blood pressure: High blood pressure further harms the kidneys. Blood pressure can be controlled by taking prescription medicine as directed, cutting back on salt intake, and keeping a healthy weight. At home, I take my blood pressure every morning and evening. There is an app that allows you to monitor and record your blood pressure. This also helps your doctor determine whether you are taking the proper medications.
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3. ‍Exercise: Physical activity has the potential to improve kidney function as well as general health. I had to combine regular exercise and nutrition control after gaining 20 pounds. And this provides me with more energy while also boosting my confidence and preventing depression.
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4. ‍Take medications as prescribed: It is important to take these medications exactly as prescribed by a healthcare provider.
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5. ‍Be mindful of how much protein you eat: In general, persons with particular stages of renal disease benefit from a diet reduced in protein and saturated fat. Plant-based proteins may be easier on the kidneys, including vegetables, beans, tofu, and fish. Mediterranean or Korean cuisine may be a good place to start.
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6. ‍Limit salt (sodium): Many sauces, soups, processed and packaged foods, and other foods tend to be high in salt, sugar, and unhealthy fats. Limiting sodium can help prevent swelling and excess fluid in the body (edema) and lower blood pressure. I also bought a sodium measurement device on Amazon. Try to consume no more than 2000mg of sodium a day. Look for words like low salt/low sodium, and unsalted. Substitute the salt for fresh spices and seasonings; for example, herbs, lemon, garlic, ginger, vinegar, pepper, and sesame oil.
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{{sarah-callout}}

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PH: What are some things you wish others understood about IgAN?

SY:

1. ‍I am not lazy, but I am always tired. The tiredness is persistent for many people. When I get up, my energy level is like someone who has just finished a long day of work.
2. ‍Appearances can be deceptive. Those who have IgAN can have very different outlooks, depending on age, the severity of the disease, and how quickly it advances. While some people may experience minor symptoms and slow progress, others may endure kidney failure and need dialysis or a kidney transplant. One of my friends, Alice, was diagnosed with the IgAN at the same age as me, but she underwent kidney dialysis and transplantation within a month. We don't feel and function the same just because we appear the same.

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A big thank you to Sarah for sharing so much about her journey and the resources that have helped her navigate her diagnosis. It's inspiring to hear how Sarah has taken control of her health and become an advocate for herself, and how she's found support through online communities and patient advocacy organizations. Sarah's advice to others who may be struggling with a chronic illness is invaluable - to take things one day at a time, prioritize self-care, and never be afraid to ask for help. We wish Sarah all the best in her continued health journey and thank her for sharing her story with us.

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If you’d like to follow along with Sarah’s journey, you can follow her on Instagram at @healthkidney_recipe.