Focal segmental glomerulosclerosis
Focal segmental glomerulosclerosis (FSGS) is a rare kidney disorder characterized by scarring (sclerosis) of the glomeruli, which are the filtering units in the kidney. The scarring takes place in small (focal) sections (segmental) of the kidneys' filters. FSGS can lead to end-stage renal disease (ESRD). FSGS is estimated to affect up to 40,000 patients in the U.S., with a similar prevalence in Europe.
Patients with FSGS often have proteinuria (protein in the urine) due to the breakdown of the normal filtration mechanism in the kidney. FSGS can also cause swelling (edema) in the legs, ankles and around the eyes; and low levels of protein in the blood.
More than 5,400 people are diagnosed with FSGS every year and new cases are on the rise. FSGS is one of the leading causes of ESRD in children and accounts for up to 20 percent of all new cases of nephrotic syndrome in children each year. FSGS is accounts for 40 percent of adults with nephrotic syndrome.
Most often, the cause of FSGS is unknown, or idiopathic. In other cases, the scarring may occur because of an infection, or another condition such as diabetes, HIV, sickle cell disease, autoimmune disease, genetic reason, or other cause. There are no approved treatments indicated for FSGS.
The following organizations may be a resource for information and support for people with FSGS and those around them:
NephCure Kidney International is an organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome, improve treatment, and find a cure.
The Kidney & Urology Foundation of America (KUFA) is a national, 501 c(3) not-for-profit organization dedicated to helping people with kidney and urologic diseases and individuals waiting for organ and tissue transplants. The Kidney & Urology Foundation focuses on care and support of the patient, the concerns of those at risk, education for the community and medical professionals, methods of prevention, and improved treatment options.
Global Genes is a non-profit patient advocacy organization working to eliminate the challenges of rare disease by building awareness, educating the global community, and providing critical connections and resources that equip advocates to become activists for their disease. Global Genes promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. Numerous tools, resources and educational events can be found on the Global Genes website www.globalgenes.org.
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service. In the US, NORD is also the official sponsor of Rare Disease Day, an annual global observance that raises awareness of rare diseases and elevates them into the public consciousness as an important health issue that cannot be ignored.
EURORDIS is a non-governmental patient-driven alliance of more than 700 rare disease patient organisations in more than 60 countries. EURORDIS strives to build a strong pan-European community of patient organisations and people living with a rare disease, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives. EURORDIS leads global efforts for Rare Disease Day and the online social platform for people living with or affected by a rare diseases RareConnect. EURORDIS represents the voice of an estimated 30 million people living with a rare disease in Europe. Follow @eurordis or see the EURORDIS Facebook page. For more information visit: www.eurordis.org.