There is no substitute for hearing directly from people living with lupus nephritis. Shared experiences can go far to help increase your understanding of your condition and provide you with tools and tips to help manage it. Take a moment to explore our newly expanded video library and hear from others with lupus nephritis as they share their challenges, discoveries and triumphs.
Nas & Pam
Following an unexpected diagnosis of lupus nephritis and lupus, a young man discovers a new outlook on life with the loving support of his mom.
Dina (Part 1)
A young woman speaks about her challenging path to a lupus nephritis and lupus diagnosis and her goal of not letting her diagnosis define her.
A determined woman takes us through her daily journey of living with lupus nephritis and ways she tries to better manage her health and wellness.
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If you are living with lupus nephritis, we'd like to hear your story.
The following are quotes from actual people living with lupus nephritis. Read on to learn more about their personal stories.
I've had to miss out on work, weddings, and many other personal events. It can be hard to really get across that it’s not just ‘I don’t feel well’.
MaryAnna, diagnosed with lupus in 2015; showing signs of lupus nephritis
Every month, and sometimes more than once a month, I have doctors' appointments to keep. Having a full-time job makes this challenging.
Gabrielle, diagnosed with lupus nephritis in 2009
On hope and perseverance
…When life punches, do you sit back and fall or do you get back up and punch? You have to fight every day no matter what it is. There's days you may think I don't want to go to work today. There's some people who wish they could.
Nas, diagnosed with lupus nephritis in 2017
And for me, 23 years in, I share with the people who have earned the right to hear my story.
Dina, diagnosed with lupus nephritis in 1994
Advice for newly diagnosed patients
I have personally found that advocating for yourself is probably the most important part of the doctor/patient relationship. You have to go in armed and ready, not in a confrontational way, but in a collaborative way.
Sara, diagnosed with lupus nephritis in 2004
Initially in my journey I had a difficult time finding support. I also did not want support at the beginning, but I did eventually seek out resources online as well as in person, but mostly online where I did find a group of patients and caregivers of people affected by lupus, lupus nephritis, and other chronic illnesses. It has been paramount to me getting along on my journey.
Carly, diagnosed with lupus nephritis in 2011