Symptoms of rare kidney diseases are often invisible or not obvious. It is important to talk to your doctor to know the symptoms to look out for and questions to ask your doctor so that simple tests can be done to determine if you are at risk or have kidney disease.
Protein in the urine (proteinuria), which can be foamy
High cholesterol
Blood in the urine (hematuria)
Fatigue
Weight gain due to extra fluid building up in the body
Dark or ‘cola’ colored urine after a viral infection (cold, respiratory illness, sore throat)
Joint pain or pain in and around the kidneys
High blood pressure
Consider asking these questions at your next doctor’s appointment:
What is my IgAN risk assessment score and how does that impact my treatment goals?
Do I have protein in my urine?
Do I have blood in my urine?
What other labs should I be concerned about?
How many patients do you treat with IgAN?
Which FDA-approved therapies should we use to treat my IgAN?
Am I a good fit for a clinical trial?
What lifestyle changes can I make such as diet, exercise, habits to improve my health?
My IgAN symptoms or side effects from my current medications (nausea, brain fog, fatigue, swelling, pain) are affecting my quality of life. What changes can we make to ensure I am able to function better?
African Americans make up 13% of the US population but account for nearly 35% of people with kidney failure in the US.
NephCure is here to help change that. We are a nonprofit patient advocacy group dedicated to empowering people with APOL1 kidney disease, and other rare, protein-spilling kidney diseases, to take charge of their health while leading the revolution in research, new treatments, and care.
Fast Facts
1 in 8 African Americans is at risk of a genetic form of kidney disease (caused by the APOL1 gene mutations).
APOL1 kidney disease is particularly aggressive and currently has no FDA-approved treatments.
APOL1 kidney disease most frequently affects individuals of African descent (i.e., people who identify as Black, African American, Hispanic/Latino, or Afro-Caribbean) in early-mid adulthood.
Approximately 40% of African Americans on dialysis have kidney failure caused by APOL1.
You may be experiencing kidney disease and be unaware — 90% of people have no visible symptoms.
What is APOL1 Kidney Disease?
Every person inherits one copy of the APOL1 gene from each parent. Sometimes, there is a mutation in one or both of the APOL1 genes. Those who inherit two mutations of the APOL1 genes have 10x-30x the risk of developing kidney disease. These mutations are only found in people of African descent.
Partner with us to change the story of APOL1 and kidney disease in African American communities.
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.
NephCure is thrilled to be able to offer this Low Sodium Cookbook to help guide you as you navigate your rare, protein-spilling kidney disease. Paying attention to what you eat and drink is an important part of managing your disease and your symptoms.
The recipes featured in this cookbook follow a low-sodium diet of between 1,500 mg to 2,300 mg per day. They were created for patients who suffer from rare, protein-spilling kidney disease who are not on dialysis and may require a more stringent renal diet. The information and recipes in this cookbook should be used as a guide. Each patient is different, as are their nutritional needs. Always consult your kidney doctor or renal dietician to determine the best diet plan for you or your loved one’s current condition. We hope you enjoy these dishes!
Sodium is a mineral found in most foods that helps balance how much fluid your body keeps. It also helps regulate nerve impulses and muscle contractions. Kidney disease may cause the kidneys to be unable to remove excess sodium from the body causing it to build up in the blood. Because sodium attracts and holds water, blood volume increases. This can cause:
High blood pressure
Swelling
Thirst
Heart disease
Strokes
Levels of sodium in the blood should be monitored by a healthcare provider. The normal level of sodium should range from 135 to 145 mEq/L. Low sodium diets limit total consumption to 1,500 to 2,000 mg daily. Hypernatremia is the medical term that describes a sodium level in your blood that’s higher than normal.
Check with your physician to receive the daily limit that’s right for you.
Salty Misconceptions
The biggest contributor to sodium consumption is not the salt shaker. Approximately 75% of the sodium you eat comes from sodium added to processed foods and restaurant foods. This makes it difficult to choose foods with less sodium and to limit how much sodium you are eating because it is already added to your food before you purchase it.
Kidney patients should NOT eliminate salt completely from their diet. Sodium is an essential nutrient that controls blood pressure and ensures nerves and muscles work properly, so you need the proper amount.
Sea Salt does NOT contain LESS sodium than table salt. Sea salt typically contains the same percentage of sodium as table salt.
High levels of sodium are not found only in food. Some over the counter medications contain high levels of sodium. Be sure to read drug labels carefully.
Tips for Reading a Food Label
Pay close attention to single serving size
Limit snacks to 140-150mg per serving
Limit Meals to 400-500mg
Avoid items that have over 8% of your daily value
Compare food labels of various brands
Avoid products that list salt or sodium containing compounds in the first 5 ingredients
Monosodium glutamate (MSG)
Sodium Bicarbonate (Baking soda)
Baking powder
Disodium phosphate
Sodium citrate
Sodium nitrate
Cooking tips:
Take time to plan ahead.
Shop the outer portion of the grocery store.
Use fresh meats and produce. Avoid processed food.
Use spices that don’t list “salt” in their title (example:
Choose garlic powder instead of garlic salt.)
Cook from scratch and use spices, herbs, lemon, garlic, ginger, vinegar and pepper to season food.
By having you collect urine for 24 hours, your doctor can get an idea of the amount of protein you are leaking each day. Protein in the urine (proteinuria) is a sign that your kidneys are not filtering correctly (since protein should stay in the blood).
Your doctor will provide you with a special collection container and instructions, but here are some general things to keep in mind:
Generally, 24-hour urine collection starts in the morning, right after your first bathroom break of the day (don’t collect that one, but do start the clock).
It is important not to skip any collection opportunities within the 24 hour period. Also, try to collect all of the urine you can, including your first void the next morning.
You can collect on the go using any clean widemouth container stored in a bag of ice.
Keep your collection container cold in the fridge or on ice and return it promptly according to the instructions provided by your doctor.
Be sure to ask about any diet changes your doctor may recommend (or not) during your 24 hour collection as some things may interfere with the test results.
Often, symptoms of kidney disease are invisible or not obvious. It is important to know the symptoms to look out for and questions to ask your doctor so that simple tests can be done to determine if you are at risk or have kidney disease.
Nephrotic syndrome is not a disease, but an umbrella term for the collection of signs and symptoms that occur when the kidney filters (glomeruli) leak protein into the urine. Don’t be intimidated by the disease names; they are just descriptions of how the kidney tissue looks under a microscope.
Some symptoms of nephrotic syndrome include:
Proteinuria- Large amounts of protein ‘spilling’ into the urine
Edema – Swelling in parts of the body, most noticeable around the eyes, hands, and feet that become painful
Hypercholesterolemia – High level of cholesterol
Hypertension – High blood pressure
Hypoalbuminemia – Low levels of albumin in the blood
Someone who is experiencing these symptoms but has not had a kidney biopsy is diagnosed with nephrotic syndrome. To learn more about what is causing a patient’s nephrotic syndrome, doctors may choose to perform a kidney biopsy. After biopsy, a patient is usually diagnosed more specifically, based on what can be seen under the microscope.
The common diagnoses are:
Focal Segmental Glomerulosclerosis (FSGS): Some sections of kidney filters show scarring.
Minimal Change Disease: Kidney tissue shows very little change from normal kidney tissue.
Membranous Nephropathy: Immune system attacks kidney tissues and damages filtering units.
Clinical research has led to EVERY disease treatment prescribed by doctors today!
Clinical research is a branch of healthcare science that determines the safety and effectiveness of treatments intended for human use. They can be used to study prevention, treatments, diagnoses or relieving symptoms of a disease. The goal of clinical trials is to determine if new treatment options are safe and effective before they are provided for patient use.
There are many benefits to clinical trials!
You have the opportunity to receive the newest treatment available!
You get to receive extra care and attention from the clinical trial doctors and staff.
Clinical trials offer hope and an opportunity to help in finding better treatments for you and others.
What are the types of clinical research?
Observational Studies
do not test new drugs or treatments. In observational studies, doctors and researchers analyze health data to find links between a diagnosis and specific health conditions.
Clinical Trials
test new ways to prevent, detect or treat diseases. Treatments may be new drugs, combinations of drugs, surgical procedures or medical devices.
Clinical trials make a difference!
All advances in treating diseases have only been made possible because of volunteer participants. To have better treatments in protein-spilling diseases, researchers rely on the participation of patients like you!
We Can Assist You In:
Learning all the details, understanding the terminology, and finding the facts about clinical trials.
Educating you and reviewing informed consent documents for you to sign. Informed consent is the most important safety guideline in a clinical trial! This consent protects your confidentiality and gives you the right to withdraw from the study at any time!
Explaining the protocols that have been put in place to prevent historic violations of trust from happening again.
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:
In a large bowl, toss oats with honey, syrup and oil.
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!
Let oats cool completely, then toss with other ingredients.
Store in a sealed cereal container or mason jar.
Important tips:
Nuts (always useunsalted) 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!
Having a good doctor-patient relationship is crucial for managing the challenges that come with Rare Kidney Disease. With the right doctor by your side, you can feel more confident and supported in your health journey, which can make a big difference in your overall well-being.
Informed about recent kidney disease research and clinical trials
Takes time to answer your questions and concerns
Easily accessible
Honest, factual and provides a great bedside manner
Willing to have tough conversations with you
Acknowledges your role as an active member of your care
Includes you in the care-planning process and integrates your goals into your care plan
Find Your NephCure Specialist Today
It’s essential to partner with a nephrologist who specializes in RKD and can offer personalized guidance tailored to your unique health needs and evolving treatment options. NephCure offers a carefully curated list of NephCure Specialists across the country who are ready to support you.
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