Author Archives: nephceurope

Comments Off on Marieke van Meel

I am a mother of 3 children of respectively 15, 11 and 9 years old.

mariekeMy eldest, my son Niels, is suffering from a rare disease called Nephrotic Syndrome, which he got at the age of 2. He has a frequent relapsing complicated form of Nephrotic Syndrome. I have studied HND Economics & Linguistics. At this moment, I work as International Coordinator Registries for Organtransplantation at Eurotransplant in Leiden, the Netherlands...

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Comments Off on Nephrotic syndrome

What is a nephrotic syndrome?

Nephrotic syndrome is defined by the following characteristics:

– proteinuria (loss of proteins into urine)

– hypo-albuminemia (decreased levels of the protein albumin in blood )
– edema (an accumulation of fluids in the body, which creates swelling)

– hyperlipidemia (an increased level of fats in blood)

Underlying mechanisms

Our blood is filtered by the kidneys. The kidney consists of millions of small “filtering units”  (glomeruli)...

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Comments Off on Helder Leong

HelderMy story began almost exactly 31 years ago when I was first diagnosed with Nephrotic Syndrome (MCD). My parents, concerned about the situation and the lack of information took me to the USA. Little information was added to my condition. So it was an unfair battle almost between me and my family against this disease at that time, because there was not enough information that exists nowadays.
During nearly 20 years I have taken very high doses of cortisone...

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Comments Off on Anders Nielsen


My name is Anders Nielsen.
I am 32 years old,live in Copenhagen in Denmark. I have always been very active with sport, and socially.
In 2008 I was diagnosed with FSGS, which is a auto-immune disease in which the immune system destroys the kidneys. I have been in a lot of different treatments. Nothing worked!
I have bad hearing which came in December 2007 and there are 2 documented patients with my diagnose who has bad hearing in the whole world. I am one of them.
In February 2008 I showed a ...

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Comments Off on Bart Hoogervorst

Hello everybody,

barthoogervorst[1]My name is Bart Hoogervorst and I am 25 years old. I have nephrotic syndrome (FSGS). I have this rare disease, since I was 2. That’s now 24 years (I’ am almost 26). I have had several recidivisms, the last one was in october 2008.
When I was 16, I had my last biopsy, before that I had MC. Because of the biopsy they found out that it was FSGS.

I have medicines to stay stable. I have cyclosporine and I also have an ACE inhibitor. The cyclosporine I have had for 13 years now.

I’ am...

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Comments Off on Wendy Cook

Hello, my name is Wendy Cook. I am a mother of two children amongst which is David who is suffering from NS.

WendyCookFamily[1]I am a trustee and chair of the ‘Nephrotic Syndrome Trust’ (Nest) based in the United Kingdom ( Nest was launched in 2005, the charity aims to:

  • Raise awareness of Nephrotic Syndrome
  • Offer a website resource, and support to sufferers and their families who are affected by Nephrotic Syndrome
  • Raise money to fund pioneering research.

I am also involved in a new global ini...

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Comments Off on Nefrotisch syndroom

Wat is nefrotisch syndroom?

Nefrotisch syndroom is een combinatie van:

– verlies van eiwit in de urine (proteïnurie) van meer dan 960 mg/m2 lichaam oppervlakte/dag

– een laag albumine gehalte in het bloed (hypo-albuminemie)

– vochtophoping in het lichaam met vooral zwelling van oogleden, enkels en buik (oedeem)

– een hoog cholesterol gehalte in het bloed (hyperlipidemie)

Onderliggende mechanismen

Nieren filteren afval uit ons bloed. Zij bevatten meer dan 1 miljoen filters, glomeruli genaamd...

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Comments Off on Nefrozinis sindromas

Nefrozinis sindromas – kas tai?

Nefrozinis sindromas – tai būklė, kuriai būdingi šie požymiai:

  • Proteinurija (baltymo netekimas su šlapimu)
  • Hipoalbuminemija (sumažėjusi baltymo, vadinamo albuminu, koncentracija kraujyje)
  • Patinimai (skysčių kaupimasis kūne, sukeliantis tinimą)
  • Hiperlipidemija (padidėjęs į riebalus panašių medžiagų kiekis kraujyje)

Pagrindiniai ligos mechanizmai

Kraujas yra filtruojamas inkstų...

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Comments Off on La Sindrome Nefrosica

Che cosa è la  sindrome nefrosica?


La sindrome nefrosica è definita dalle seguenti caratteristiche:

-proteinuria (perdita di proteine ​​nelle urine)

-ipoalbuminemia (diminuiti livelli di proteine nel sangue)

-edema (accumulo di liquidi nel corpo con conseguente gonfiore)

-iperlipidemia (aumento dei livelli  dei lipidi o grassi nel sangue)

Meccanismi Patogenetici


Il nostro sangue viene filtrato dai reni. Il rene è composto da milioni di piccole “unità filtranti” (glomeruli)...

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Comments Off on Nefrotisk syndrom

Oversættelse af René Frydensbjerg Andersen, MD, PhD, Aarhus Universitetshospital, Skejby

Hvad er nefrotisk syndrom?

Nefrotisk syndrom er karakteriseret ved:

–          Proteinuri (tab af protein/æggehvidestof i urinen)

–          Hypoalbuminæmi (lavt niveau af protein/albumin i blodet)

–          Ødem (væske holdes tilbage i kroppen og medfører hævelser)

–          Hyperlipidæmi (øget koncentration af fedtstoffer i blodet)

Mekanismen bag symptomerne

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