Management

No curative treatment is available for LAMB2-associated nephropathy. The kidney failure does not respond to steroid treatment or immunosuppression but proteinuria may be reduced with ACE inhibitors (ramipril, lisinopril, enalapril etc) and possibly SGLT2 inhibitors. Transplantation is curative for the kidney disease. The ocular abnormalities (small eye, squint, short sightedness) are treated as for other patients with these conditions and often with surgery but eyesight may be severely impaired. The muscle abnormalities cannot be treated.

There are Patient Support organisations in the US, UK and Europe, and you can find them by searching the internet. These include Nephcure that holds virtual meetings, the Nephrotic Syndrome Foundation that provides some financial and emotional support, and the National Kidney Foundation that also provides information. All of these are in the US. There are also other organisations that focus on rare diseases, and provide community and resources throughout the world. Often one group can provide contact details for people with your condition in your own country.