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Focal-Segmental-Glomerulosclerosis (FSGS)

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Overview and Symptoms:

Focal Segmental Glomerulosclerosis (FSGS) is a rare kidney disease characterized by dysfunction in the part of the kidney that filters blood (glomeruli). Only some glomeruli are affected, but continued damage can lead to kidney failure.

Protein in the urine, which can be foamy (proteinuria)

Low levels of protein in the blood (hypoalbuminemia)

Swelling in parts of the body, most noticeable around the eyes, hands, feet, and abdomen (edema)

Weight gain due to extra fluid building up in your body

Can cause high blood pressure (hypertension) and high fat levels in the blood (high cholesterol)

Fast Facts


FSGS occurs more frequently in adults than in children and is most prevalent in adults 45 years or older.



African Americans are 5 times more likely to get FSGS in comparison with the general population


Every FSGS patient follows a unique journey.



Focal Segmental Glomerulosclerosis is one of the leading causes of End Stage Renal Disease (ESRD) in children



FSGS is associated with up to 20% of all new cases of Nephrotic Syndrome in children each year.

Treating Your Disease

Short-Term Goals

The short-term goal of treatment is to stop protein spillage completely (remission) or lower the amount of protein lost in the urine as much as possible.

Long-Term Goals

The long-term Goals of treatment include preventing relapses of protein in the urine and preventing the deterioration of kidney function.

There are currently no FDA-approved treatment options for FSGS. The standard first-line treatment for FSGS is Prednisone, a corticosteroid.

How to Live With Your Disease

1

Following a low-fat, low-sodium diet will help improve your kidneys’ function and your FSGS symptoms.

2

Finding a nephrologist who specializes in FSGS is very important to your long-term health.

3

Learn about your disease, treatment options, and clinical trials in order to better advocate for yourself.

4

NephCure Kidney International can help you connect with other patients and find support to manage your disease.

Kidney-Friendly Recipe: Italian Herb Grilled Chicken with Grilled Veggies and Quinoa

As kids head back to school and the long summer nights slowly slip away, celebrate the end of the season with a delicious meal on the grill—perfect for Labor Day Weekend! This recipe comes from NephCure’s Chef Sachet, a patient parent whose 12-year-old son Aiden was diagnosed with FSGS in January 2017. Aiden’s kidney disease rapidly progressed—just five months after diagnosis, he ended up on dialysis and eventually went on to receive a kidney transplant. As a kidney disease caregiver, Chef Sachet says ‘it’s important to me to keep kidney-friendly recipes in mind!’

Yield: 4 people

Prep time: 15 min

Cook time: 25 minutes

Sodium: 139mg per serving

Ingredients:

  • 4 6-oz chicken breasts (with tenders attached) IMPORTANT NOTE: Check the sodium content on the chicken breasts to make sure they are no higher than 75 mg of sodium per 4 ounce serving or no higher than 113 mg per 6 ounce package.
  • 2 cups of quinoa (any kind works)
  • 1 large zucchini or squash
  • 1 lime
  • 1 lemon
  • ½ handful of fresh parsley, minced
  • 2 sprigs of fresh oregano, minced
  • 2 sprigs of fresh thyme, minced
  • 2 heads of fresh garlic, minced
  • ¼ cup of extra virgin olive oil (EVOO)
  • Pepper (to taste)
  • 4 cups of no-salt veggie stock
  • 2 Tbsp. of unsalted butter

Instructions:

  • First, set your chicken breasts aside in a large bowl.
  • Mince all herbs and toss in chicken with garlic, pepper, lemon juice, and a drizzle of EVOO. Coat chicken well and marinate for 15 minutes.
  • Heat the vegetable stock in large pot on medium-high heat until simmering. Add quinoa. Lower heat, add 2 Tbsp. of butter and a sprig of thyme. Let cook until all of the liquid is absorbed. Once most liquid is gone, turn off the heat, and cover the quinoa until serving time.
  • Once the quinoa is cooking, cut vegetables into thick slices. Add pepper, EVOO, and a squeeze of lime, and then place them on the grill.
  • Remove chicken from the fridge and start to grill it: 7-10 minutes on each side until the internal temperature reaches 165 degrees Fahrenheit.

Chef’s Tips:

  • Do not flip your chicken constantly when grilling. It will take a long time to cook and will dry out. Plus, you won’t get those awesome grill marks!
  • Raw veggies can take a while on the grill. Season and lubricate them with oil ahead of time, but don’t add too much oil. It will just burn off and char the veggies.
  • When using store-bought stock, always use low-sodium or no-salt varieties.

Chef Sachet’s Kidney-Friendly Granola Recipe

Need an on-the-go snack? Want to switch up the breakfast routine? Try making some of Chef Sachet’s kidney-friendly granola. As a mother and caregiver to a young boy suffering from FSGS, her recipes are tried and true for those following kidney conscious diets.

Granola Recipe

Prep Time: 5 min

Cook Time: 30 min

Yield: A LOT!

Ingredients:

  • 6 cups oats
  • 3 cups toasted shaved almonds
  • 1 1/2 cups toasted sunflower seeds
  • 1 cup unsweetened toasted coconut flakes
  • 1 cup plumped raisins, dried cranberries
  • 1 cup pure maple syrup
  • 1 cup honey
  • 1/2 cup coconut oil
  • 2 tsp ground cinnamon (optional)

Instructions:

  1. In a large bowl, toss oats with honey, syrup and oil.
  2. Lay onto a non-stick baking sheet and toast in the over at 375 degrees for 20 min (or until oats are toasted and stiff). Be careful as to not over toast the oats as they will burn and turn bitter!
  3. Let oats cool completely, then toss with other ingredients.
  4. Store in a sealed cereal container or mason jar.

Important tips:

  • Nuts (always use unsalted) provide a great source of protein for those trying to stay away from high phosphates in meat.
  • Add some m&m’s and dried apricots and you got yourself a yummy trail mix!
  • Add some yogurt, fresh fruit, and a drizzle of honey and you got yourself a delicious breakfast alternative!