Eric is 35 years old and has been living with a chronic rare illness for around 20 years: membranous nephropathy. When he was a teen, he noticed that his legs were suddenly starting to swell, an alarming and unusual symptom, especially for someone of his age. After his primary care physician ran a few tests, they detected high levels of protein in his urine (proteinuria). He was referred to a nephrologist from that point on and a kidney biopsy revealed the diagnosis of membranous nephropathy.
About Membranous Nephropathy
Membranous nephropathy, sometimes called membranous glomerulonephritis, is a disease of the kidneys in which the small blood vessels inside the organ become thickened and suffer damage, causing them to leak proteins into the urine. The cause of membranous nephropathy is not always clear, but the mechanism of the disease is autoimmune in nature. It can occur on its own or alongside other conditions, such as other autoimmune disorders, certain tumors, infections, inorganic salts, or during the use of certain drugs. Patients often present with symptoms of nephrotic syndrome, including high lipid levels, low serum albumin, and proteinuria. Other symptoms include fatigue, weight gain, foamy urine, loss of appetite, high blood pressure, shortness of breath, blood in the urine, and abdominal pain. Treatment typically involves the use of immunosuppressants. About a third of patients see remission without treatment, while another third continue to experience symptoms without progression, and the final third see their condition progress as a form of chronic kidney disease that can lead to organ failure. To learn more about membranous nephropathy, click here.
“It was a big change for me since I went from relatively healthy to having regular medications and doctor visits every few months…it changes the way you look at the world really early on.” – Eric
Though living with membranous nephropathy is a challenge, Eric believes that he is still quite fortunate compared to other patients, as he has been able to keep his symptoms under control most of the time. However, he has still had to deal with some painful comorbid conditions, such as gout, a serious disease caused by too much uric acid in the blood. Eric was finishing up his undergrad college career when he started having serious pain in his foot.
“I had never had it before, and my foot started swelling up and getting inflamed. I couldn’t walk on it.”
Eric had to walk across the graduation stage using a pair of crutches to get his diploma. Gout is a difficult disease for anyone, but can be especially risky for patients with kidney disease because of the excessive uric acid buildup that occurs. This can potentially exacerbate kidney damage, and can occur even when gout symptoms have subsided.
He also talked about the mental health aspects of living with a chronic illness, a struggle that was particularly challenging early on. Eric said that the anxiety of the diagnosis really piled onto other aspects of his life as a teen living with the disease. He eventually sought direct treatment for his mental health struggles later in life and found a path forward that worked for him.
“The mental effects were never really talked about when I was first diagnosed, but the mental component was a big factor, at least in my case.”
More recently, Eric has started getting involved in the patient community, which has helped him feel less isolated in facing his membranous nephropathy.
“It helps you realize that you’re not the only one. You may not encounter another patient every day in your life, but there are people out there with the same concerns.”