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Understanding a Nutritions Facts Panel

Start with the serving size

Look here for both the serving size (the amount for one serving) and the number of servings in the package.
Compare your portion size (the amount you actually eat) to the serving size listed on the panel. If the serving size is one cup and you eat
two cups, you are getting twice the calories, fat and other nutrients listed on the label.

Check Out the Total Calories and Fat

Find out how many calories are in a single serving and the number of calories from fat. It’s
smart to cut back on calories and fat if you are watching your weight.

Let the Percent Daily Values Be Your Guide

Use percent Daily Values (DV) to help evaluate how a particular food fits into your daily meal plan:

Daily Values are average levels of nutrients for a person eating 2,000 calories a day. A food item with a 5 percent DV of fat provides 5 percent of the total fat that a person consuming 2,000 calories a day should eat.
Percent DV are for the entire day, not just one meal or snack
You may need more or less than 2,000 calories per day. For some nutrients you may need more or less than 100 percent DV.

The High and Low of Daily Values

5 percent or less is low. Aim low in total fat, saturated fat, trans fat, cholesterol and sodium.
20 percent or more is high. Aim high in vitamins, minerals and fiber.

Fat, Cholesterol and Sodium

Eating less fat, cholesterol and sodium may help reduce your risk for heart disease, high blood
pressure and cancer

Total fat includes saturated, polyunsaturated, monounsaturated and trans fat. Limit to 100 percent DV or less per day.
Saturated fat and trans fat are linked to an increased risk of heart disease.
High levels of sodium can add up to high blood pressure.
Remember to aim for low percentage DV of these nutrients.

Get Enough Vitamins, Minerals and Fiber

Eat more fiber, vitamins A and C, calcium and iron to maintain good health and help reduce your risk of certain health problems such as osteoporosis and anemia.
Choose more fruits and vegetables to get more of these nutrients.
Remember to aim high for percentage DV of these nutrients.

Additional Nutrients

You know about fat and calories, but it is important to also know the additional nutrients on the Nutrition Facts Panel.

Protein: Most Americans eat more protein than they need, so a percentage Daily Value is not required on the label. Eat moderate portions of lean meat, poultry, fish, eggs, low-fat milk, yogurt and cheese, plus beans, peanut butter and nuts.
Carbohydrates: There are three types of carbohydrates: sugars, starches and fiber. Eat whole-grain breads, cereals, rice and pasta plus fruits and vegetables
Sugars: Simple carbohydrates or sugars occur naturally in foods such as fruit juice (fructose) or come from refined sources such as table sugar (sucrose) or corn syrup.

Check the Ingredient List

Foods with more than one ingredient must have an ingredient list on the label. Ingredients are listed in descending order by weight. Those in
the largest amounts are listed first. This information is particularly helpful to individuals with food sensitivities, those who wish to avoid pork or
shellfish or limit added sugars or people who prefer vegetarian eating.

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What is Clinical Research?

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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.

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24 Hour Urine Collection

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Purpose:

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.

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Top Ten Tips for Your Telehealth Appointment

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1. Ensure your technology meets the meeting requirements

Decide ahead of time what device you will use for your telemedicine appointment (computer, laptop, smartphone, or tablet). You’ll also need a reliable internet connection. If you don’t have one at home, you may be able to find a free wifi hot spot at your local library or at a national food chain. Wi-Fi Map is an app that can help you find a wifi hotspot, without an internet connection.

2. Set-up prior to your appointment

Your physician’s office may need you to set up an online video conferencing account or download an app for your telehealth appointment. Ask for a direct contact number in case you have issues during your appointment.

3. Choose a quiet, private area for your appointment

Find a quiet place to reduce distractions and interruptions, and to make sure your doctor can see and hear you during your appointment. Good lighting will also help, try facing a window.

4. Prepare paperwork ahead of time

Prepare or update your recent medical history, medication list, and recent lab work. This will help if you are seeing a specialist or doctor for the first time. Also, have your insurance information, pharmacy contact, consent for telehealth appointment signed, and payment information ready. Most physicians’ offices will contact you in advance to obtain basic information and review it prior to the appointment.

5. Obtain vital signs

If you are able, obtain your vital signs prior to your appointment. If you have an electronic blood pressure cuff, you can find your blood pressure and heart rate prior to your appointment. You can also take your weight and temperature at home.

6. Take pictures of areas of concern

Document any rashes, swelling, or areas of concern you want the doctor to look at. Let the physician’s office staff know you have photos when you set up your appointment. You may need to email the pictures or upload them into a secure patient app. Likewise, if you have good lighting during your virtual appointment, you can show the doctor your areas of concern there.

7. Be prepared for co-pays

It’s important to know most insurance companies consider telehealth visits comparable to a face-to-face visit. You need to expect the same co-pay and any outstanding payment due at the time of your visit.

8. Write down questions ahead of time

Having a new type of visit may cause distraction or stress, writing down your questions to ask your doctor can help reduce it and help you remember everything you want to say.

9. Review your treatment plan

You should review your treatment plan with your physician at the end of your appointment. Repeat what you understand to be the next steps, so your physician can confirm. It’s also helpful to take notes during your appointment, so you do not forget key details. Don’t be afraid to ask clarifying questions during your appointment too.

10. Set up a follow-up appointment

At the end of your telehealth visit, set up a follow-up visit as necessary. Ask if your next appointment will be another telehealth or face-to-face, so you can prepare appropriately.

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Understanding Kidney Disease: Fact vs. Myth

Being diagnosed with kidney disease often leads to a plethora of unknowns, as medical literature on such conditions may be scarce or outdated. Myths surrounding these diagnoses can exacerbate confusion and fear, making it challenging for patients to navigate their treatment options. Especially with rare kidney disease, misconceptions about their causes, symptoms, and prognosis are widespread, further complicating the journey for those affected.

Click the PDF below to view a chart of Facts and Myths about kidney disease

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Myth:	Fact:
Kidney disease runs in my family, but I work out regularly and eat well so I’m not worried.	Some forms of kidney disease are genetic, and even the healthiest people may still be at risk.
Kidney disease runs in my family, so I know I’m eventually going to get it too and there’s nothing I can do about it.	If you talk to your doctor early on about kidney disease running in your family, there are some steps you can take to protect your kidneys.
My blood pressure is high, but my doctor said we just need to find the proper medication to treat it	Persistent high blood pressure can be a sign of kidney disease which could require additional medication.
My family doctor is familiar with my health history and has never mentioned kidney disease, and I feel wonderful, so I’m not concerned.	By the time you feel the signs and symptoms of kidney disease, it could be more advanced. Early kidney disease is often invisible and has no symptoms.
I have been diagnosed with chronic kidney disease, and my doctor told me that waiting until my kidneys fail to go on dialysis is my only option.	Depending on the type of kidney disease you have, there may be treatment options that could help save your kidneys and prevent you from going on dialysis. Talk to your family about your concerns and desire to seek a second opinion with a kidney specialist. Talk to your kidney doctor about your specific diagnosis.
My family doctor takes care of many people with kidney disease and understands how to take care of me.	People living with kidney disease should be seen by a nephrologist (kidney doctor) to make sure they are taking the right medications and following a kidney-friendly diet.
Kidney disease runs in my family so I know it may be genetic, but genetic testing is costly.	Today, there are several low-to-no-cost genetic testing options, that include genetic counseling available. These tests could determine if you have the APOL1 gene that puts you at greater risk for FSGS, a specific type of chronic kidney disease
Kidney disease only affects the elderly.	Although it may seem this way, this is not the case. FSGS, a rare form of kidney disease, commonly presents in young Black people in their teens and twenties. Parents should be involved in discussions about kidney disease with their teens and young adult children.
People get kidney disease because they eat poorly and don’t take care of themselves.	There is a form of kidney disease called FSGS that is caused by a genetic variant called APOL1. This gene puts some people at greater risk of kidney disease, whether they live a healthy lifestyle or not.
Having a nice, friendly doctor is more important than their understanding of kidney disease.	While it is important to have a doctor who listens to you, it is equally important to be attentive to your kidney health and proactive with your care.

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Talk to Your Doctor About Your Kidney Health

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.

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Signs and Symptoms of Kidney Disease:

Unexplained tiredness
Weakness
Nausea
Loss of appetite
Difficulty concentrating
Trouble sleeping
Dry, itchy skin
Feeling cold when others are warm
Feeling faint or dizzy
Ammonia-like breath
Food tastes like metal

Foamy or bubbly urine
Frequent urge to urinate
Blood in the urine
Brown-colored urine
Pressure when you urinate
Puffiness around eyes
Swelling in the ankles and feet
Frequent muscle cramps
High blood pressure
High cholesterol
Shortness of breath after minimal effort

Consider asking these questions at your next doctor’s appointment:

Do I have protein in my urine?
Do I have blood in my urine?
Why does the swelling in my legs and feet never go away, even after rest or sleep at night?
I have a family history of kidney disease. Does this put me at greater risk?
We have tried several blood pressure medications and none of them have worked. Why?
Why do I feel so tired all the time? I have a hard time with normal daily activities.
I have a hard time concentrating, even on small tasks. Why do I have “brain fog”?
I have little to no appetite and get nauseated a lot. What has changed in my body to make
me not interested in eating?

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Patient Empowerment Flyer

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I AM MORE THAN MY HEALTH CONDITION

My Choices

I am empowered
because I use and enforce
my right to be a
decision-maker as it
relates to my health and
treatment options.

My Needs

I am empowered because
I have access to resources
and information that help me
identify my needs and figure
out how my care should
address my needs.

My Voice

I am empowered by the
education that patient
organizations like NephCure
provides. This allows my voice
to be amplified and to become
a part of a more significant
change in health outcomes.

My Values

I am empowered because I know health equity means having access to the medical care I deserve. Healthcare should NOT be a privilege for some. All people should receive the same access to care so that we can have healthier individuals and communities.

My Expertise

I am empowered because my
expertise in living with a rare
disease is valuable. I know my
journey is powerful
and has meaning.

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Understanding Primary Nephrotic Syndrome

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“NEPHROTIC WHAT..?”

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.

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Low-Sodium Cooking for Kidney Health Cookbook

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!

DOWNLOAD PDF of Cookbook

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Kidney Biopsies

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Kidney biopsies are important because they can help your doctor learn what is causing your nephrotic syndrome and how severe it is. This will help them form your treatment plan. Additional biopsies may be done later on to see how your treatment is working.

Why Biopsy?

For Adults

Kidney doctors are more likely to recommend a biopsy for adult patients when they are first diagnosed.

The results of the biopsy will help determine what is causing a patient’s Nephrotic Syndrome and can help guide treatment.

For Children

Nephrologists will usually recommend a child have a biopsy if:

They have certain clinical findings when they are first diagnosed (such as a family history of Nephrotic Syndrome).
They do not respond to their very first course of prednisone (“steroid resistant”).
They initially responded to steroids, but have gradually become less responsive, have frequent relapses, or cannot be weaned off of steroids (“steroid dependent”).
They have unusual findings such as abnormal kidney function.

The Biopsy Procedure

Biopsies are typically performed by a nephrologist or interventional radiologist.

Biopsies are often done after light sedation or local anesthesia.

A small piece of tissue from one kidney is taken by a specialized needle for examination under a microscope by a kidney pathologist.

After a biopsy, limited activity or bed rest will be recommended for a period of time.

Understanding Your Kidney Biopsy

learn from an expert of kidney biopsies, Dr. Chris Larsen from Arkana Labs. Dr. Larsen talks about everything from biopsy to diagnosis– and why the person who reads your biopsy is so important.

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How Kidneys Work

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Function of the Kidneys:

The kidneys maintain proper blood composition by regulating water, protein, and electrolyte levels. When waste material is detected in the blood, the kidneys filter it and pass it on to the bladder.

Fast Facts

The kidneys sit just below the rib cage toward the back of your body on the right and left side

Each kidney is roughly the size of your fist

In one day, your kidneys filter almost 115 liters of blood and produce up to 2 liters of waste in the form of urine

Males are twice as likely to have MCD as females.

If MCD does not recur for three years, there is a good chance that it will not return.

Nephrotic Syndrome…

occurs when glomeruli become damaged, allowing key proteins to leave the body

Protein Loss…

Upsets the balance of the blood chemistry and results in swelling, malnutrition, and proteinuria

Left untreated Nephrotic Syndrome can progressively and permanently damage the kidneys and lead to complete kidney failure

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Start with the serving size

Check Out the Total Calories and Fat

Let the Percent Daily Values Be Your Guide

The High and Low of Daily Values

Fat, Cholesterol and Sodium

Get Enough Vitamins, Minerals and Fiber

Additional Nutrients

Check the Ingredient List

Clinical research has led to EVERY disease treatment prescribed by doctors today!

There are many benefits to clinical trials!

What are the types of clinical research?

Observational Studies

Clinical Trials

Clinical trials make a difference!

We Can Assist You In:

Purpose:

Your doctor will provide you with a special collection container and instructions, but here are some general things to keep in mind:

1. Ensure your technology meets the meeting requirements

2. Set-up prior to your appointment

3. Choose a quiet, private area for your appointment

4. Prepare paperwork ahead of time

5. Obtain vital signs

6. Take pictures of areas of concern

7. Be prepared for co-pays

8. Write down questions ahead of time

9. Review your treatment plan

10. Set up a follow-up appointment

Top 10 Questions to Ask Your Nephrologist

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.

Signs and Symptoms of Kidney Disease:

Consider asking these questions at your next doctor’s appointment:

I AM MORE THAN MY HEALTH CONDITION

My Choices

My Needs

My Voice

My Values

My Expertise

“NEPHROTIC WHAT..?”

Some symptoms of nephrotic syndrome include:

The common diagnoses are:

Why Biopsy?

For Adults

For Children

The Biopsy Procedure

Understanding Your Kidney Biopsy

Function of the Kidneys:

Fast Facts

Nephrotic Syndrome…

Protein Loss…

Left untreated Nephrotic Syndrome can progressively and permanently damage the kidneys and lead to complete kidney failure

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