Tuesday, July 24, 2012

What is Nephrotic Syndrome???

Never heard of it? Neither had we. That is probably due to the fact that it only affects 5 out of every 100,000 kids....pretty rare.

What are the facts of Nephrotic Syndrome?
Nephrotic syndrome may affect adults and children, of both sexes and of any race. In total, 26 million Americans suffer from Chronic Kidney Disease, with Nephrotic Syndrome as one of the most common forms.1 “Idiopathic” Nephrotic syndrome (NS), or Nephrotic Syndrome that arises seemingly spontaneously, is a rare disease syndrome and yet responsible for approximately 12% of all causes of end-stage kidney disease (ESRD) and up to 20% of ESRD in children.2 Approximately 5 out of every 100,000 children are diagnosed with Nephrotic Syndrome every year (incidence) and 15 out of every 100,000 children are living with it today (prevalence).

How is NS treated?
Your nephrologist may recommend:
• Medications that suppress your immune system
• Diuretics and low salt diet help to control edema
• A medication that blocks a hormone system called the renin angiotensin system (ACE inhibitor or ARB) to control blood pressure or lower urine protein
• Anticoagulants to prevent blood clots
• Statins to lower the cholesterol level
• Maintaining a healthy diet: Correct amounts of protein and fluid intake according to your nephrologist’s recommendations. A healthy diet consists of low salt with emphasis on fruits and vegetables, low in saturated fat and cholesterol. A low salt diet may help with swelling in the hands and legs.
• Exercising
• Not smoking
• Vitamins
Good news: Corticosteroids help approximately 90% of patients who have MCDBad News:
• 70% of children will experience a relapse.
• Corticosteroids have potentially serious adverse effects such as obesity, poor growth, hypertension, diabetes mellitus and osteoporosis.
• Corticosteroids are sometimes ineffective, called “Steroid resistance” or a person can become “Steroid dependent.”
Alternatives (which all carry significant side effects) include:
• Immunosuppressants such as Cyclophosphamide (Brand names include Endoxan, Cytoxan, Neosar, Procytox, Revimmune) and Cyclosporine (Brand names include Neoral, Sandimmune, Gengraf)
• Tacrolimus (Brand name: Prograf)- another immunosuppressant
• Mycophenolate mofetil (Brand name: CellCept)- another immunosuppressant
• Antibiotics such as Levamisole
More research is needed to identify new drug therapies

What are the complications of NS?• Edema - swelling
• Renal vein thrombosis - blood clots
• Increased blood cholesterol, can lead to Atherosclerosis - hardening of the arteries
• Malnutrition
• Skin breakdown
• Infection such as pneumonia
• End Stage Renal Disease
• Congestive Heart Failure
• Pulmonary edema - fluid in the lungs

So, as you can tell much research is needed in figuring out this condition. We can only get that research through greater awareness and more DONATIONS. Even $10 is GREATLY appreciated!


  1. I have read and researched blue green algae, such as Spirulina and Klamath lake algae. The brand I have is health force, itis
    bit expensive, but it contains phychocyanin, the only compound that rebuilds the kidneys, not flushing, but regeneration to the body's best ability. I have found it useful for my swelling, due to liver disease, cancer, etc. God bless

  2. Thanks for sharing! I have heard of some great benefits of algae, ill have to look more into it!