Living with FSGS
Information, shared experiences and research connections for people living with FSGS and those who support them.
Understanding FSGS
Often the cause can't be found, though infections, certain medicines, obesity, sickle cell disease, urine backing up into the kidneys or gene changes may play a role, and a large portion of people with FSGS go on to develop chronic kidney disease.
Signs & symptoms
FSGS can look different from person to person. Signs the sources describe include:
- Foamy urine (from protein in the urine)
- Swelling from extra fluid in the body
- Weight gain
- Poor appetite
- High blood pressure
- Higher creatinine levels on blood tests
Tell your care team about new or changing symptoms.
Diagnosis
- 1Exam and history
A clinician may check for swelling and high blood pressure and ask about your health and medicines.
- 2Urine and blood tests
Tests can measure protein in the urine and show how well the kidneys are working.
- 3Kidney biopsy
A small sample of kidney tissue may be studied under a microscope to look for scarring in the filters.
Care & treatment
- Monitoring
- Regular urine and blood tests help your care team follow protein levels and kidney function.
- Treatment
- Depending on the person, care may include medicines that calm inflammation, lower blood pressure or remove extra fluid, plus diet changes such as less salt.
- Your plan
- If kidney function declines, your care team may talk with you about options such as dialysis or a kidney transplant.
Discuss benefits, risks and follow-up with your care team.
Everyday life
A few simple habits can make each visit more useful.
- Keep a log of swelling, weight changes and how your urine looks.
- Bring a list of all your medicines to every visit.
- Ask your care team before changing how much salt, fluid or protein you have.
You are more than your diagnosis
Perspectives from people navigating life with FSGS.
Explore research for FSGS
Explore actively recruiting FSGS studies with HealthSpark.
Find actively recruiting studies for FSGS with HealthSpark. Share your city to explore research near you.
- Phase 3 studies first, with nearest research center
- Study information from ClinicalTrials.gov
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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