Byron Wade, a patient with IgA nephropathy (IgAN), discusses his personal diagnostic journey and a recent study looking at other patients’ experiences.
IgAN is characterized by the accumulation of IgA antibodies in the kidneys. In the early stages, patients with IgAN have no symptoms. The first sign of this condition may be blood in the urine. End-stage kidney disease may develop if the disease is not treated properly. In most instances, the cause of this condition is unknown; however, certain disorders have been linked with IgAN, such as cirrhosis of the liver, celiac disease, and HIV infection. The condition can also often be triggered by a viral illness.
Mr. Wade explains how at the time of his diagnosis in 2020, the most difficult part was the unknown. In 2020, IgAN was an even lesser known condition than it remains today and no approved treatments existed. While management with steroids and blood pressure medications were the initial treatment plan, Mr. Wade eventually required a kidney transplant in 2023. His hope for patients with IgAN moving forward, with greater awareness of the condition and several treatment options approved or in late stage development, is that other patients are able to avoid his struggles.
A study presented at GlomCon highlighted the experiences of patients with IgAN throughout different stages of their disease, of which Mr. Wade was a co-author.
Key findings showed that a vast majority of patients recalled experiencing symptoms prior to diagnosis, but waited about 9 months before seeking. Patients reported that typically abnormal lab results were usually what led to referral to a nephrologist, but these wait times could be up to 12 months. Additionally, many patients leave their appointments feeling confused and wanting clearer guidance on their disease and treatment options. Patients also indicated large gaps between what they value and how current treatments perform.
For more information on this study, click here.
To learn more about IgAN and other rare kidney diseases, visit https://checkrare.com/diseases/kidney-and-urinary-diseases/
