Video Library
There is no substitute for hearing directly from people who are 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. Watch as people with lupus nephritis share their experiences, challenges, and triumphs.
First-hand Perspectives
If you are living with lupus nephritis, we'd like to hear your story.
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The following are quotes from actual people living with lupus nephritis. Read on to learn more about their personal stories.
On challenges:
The biggest challenge is accepting the transformation of your life... having to stop working after one year after diagnosis, the burden on my husband and family, the physical limitations, and the amount of medication all created additional hurdles.
Monique, diagnosed with lupus nephritis in 2010
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
Living with lupus nephritis takes a lot of adjusting... not just with me, but with the people around me, because some days they're used to me being up and ready to go... then other days I can't lift my head up off the pillow.
Dina, diagnosed with lupus nephritis in 1994
It's hard to keep up with all the doctors and know who to ask what, and who's responsible for watching certain levels and monitoring specific things.
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:
I have a lot of stuff that I have planned for my life and how I envision it. So, it helps to move out... things and experiences that don't really matter.
Dina, diagnosed with lupus nephritis in 1994
There's not a lot that we can control, but when you feel like you're doing the very best to take care of you, you feel empowered and it gives you more hope to live a good life with this disease.
Gabrielle, diagnosed with lupus nephritis in 2009
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:
The newly diagnosed need to know that it is possible to live a full, happy, and meaningful life even with lupus nephritis. That it is not a death sentence. They need to feel hopeful and to see and hear stories of other lupus patients who are living and thriving, working, falling in love.
Dina, diagnosed with lupus nephritis in 1994
Stay organized with a spreadsheet. Keep track of your symptoms... the meds you're on, when you take them... each doctor's appointment.
MaryAnna, diagnosed with lupus in 2015; showing signs of lupus nephritis
They need to know that it will take a little time to figure out how to live with a chronic illness and give themselves patience and kindness during that time, because there will be setbacks and challenges to face and fight.
Dina, diagnosed with lupus nephritis in 1994
It's good to cry and be angry, whatever emotions you feel are perfectly normal, and discussing these with trusted individuals is a good first step in living your best life.
Gabrielle, diagnosed with lupus nephritis in 2009
It is important to take care of oneself in every way possible — physically, emotionally, spiritually, nutritionally...
Dina, diagnosed with lupus nephritis in 1994
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