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Diverse patient experiences in IgA nephropathy

For Patients With IgA Nephropathy, the Burden Can Be Significant1,2

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“It seems like I can never get enough sleep… if I’m in a meeting, I struggle to keep my eyes open.”

Patient portrayal.

  • Patients may struggle emotionally with the uncertainty of outcomes and the potential for progression to kidney failure3,4 
  • Physically, some patients may struggle daily with disease symptoms, such as chronic fatigue, edema, insomnia, and hypertension. Some may continue to be at risk for disease progression, defined by persistent proteinuria >1 g/day, despite being on optimized supportive care1,2
  • Supportive care and steroids may reduce immediate symptoms but may cause challenging side effects that can make day-to-day life challenging1

Hear from real patients living with IgA nephropathy5

“I can't stress enough the toll this disease takes on me, EVERYTHING changed.”

“You may look well on the outside.… Inside, you feel as if you are filled with lead. Even getting out of bed to get a drink of water can be difficult on a bad day.”

“The possibility of needing frequent dialysis or to be placed on a transplant list is frightening. And in the case of a transplant, there is a good chance the disease will reestablish in the transplanted kidney.”

“You never know waking up how the day is going to be. While you may feel fine in the morning, the afternoon can change very quickly.”

Can better understanding each patient’s disease provide insights into their day-to-day experience?

Learn about heterogeneity in IgAN

Patients may present with various clinical signs1

Learn more

Explore a case of a patient with persistent proteinuria

See John’s story here

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Explore a case of a patient with glomerular inflammation

See Diane’s story here

Download
IgAN, immunoglobulin A nephropathy.
 
References: 1. Rovin BH, Adler SG, Barratt J, et al; Kidney Disease: Improving Global Outcomes (KDIGO) Glomerular Diseases Work Group. KDIGO 2021 clinical practice guideline for the management of glomerular diseases. Kidney Int. 2021;100(suppl 4):S1-S276. doi:10.1016/j.kint.2021.05.021 2. National Institute of Diabetes and Digestive and Kidney Diseases. IgA nephropathy. National Institutes of Health: 2015. Accessed April 11, 2023. https://www.niddk.nih.gov/health-information/kidney-disease/iga-nephropathy 3. Lafayette RA, Kelepouris E. lmmunoglobulin A nephropathy: advances in understanding of pathogenesis and treatment. Am J Nephrol. 2018;47(suppl 1):43-52. doi:10.1159/000481636 4. Carter SA, Gutman T, Logeman C, et al. Identifying outcomes important to patients with glomerular disease and their caregivers. Clin J Am Soc Nephrol. 2020;15(5):673-684. doi:10.2215/CJN.13101019 5. Feldman DL, White EM, Julian B, et al. The Voice of the Patient: Externally Led Patient-focused Drug Development Meeting on IgA Nephropathy. National Kidney Foundation; 2020.