Microsoft word - nephie_flyer_ englisch_patienteninformation.doc

Information for Patients
Priority Objectives:
Via European parents and thus via the Soci- and Interested People
ety for Paediatric Nephrologists (ESPN) we have direct contacts to pediatric nephrolo- healing of the very rare, presumably immu- gists in the Netherlands, France, Belgium, nological idiopathic nephrotic syndrome. Evaluation of observational research in or- der to find more considerate therapies giving We attend conferences and congresses and a chance to children’s self-healing compe- thus stay informed about relevant and newly published developments in the treatment of the nephrotic syndrome. We want to support Goals of Empowerment:
specific research for a treatment of the nephrotic syndrome with less side effects. - exchange of expert knowledge, patients’ Via a public internet forum we are in indirect meetings, organization of scientific sym- contact with about 300 concerned families - communication and public work, informa- On 16 April 2010 we have been accepted as - encouragement of interdisciplinary col- Nephie e.V.
- internet: general information, forum and them and be their „voice“. We want to inform about this small sub-group of kidney dis- eases, for which transplants are no solution. Member of „Allianz Chronischer Seltener www.achse-online.de
(Leipzig, Berlin, München, Lüneburg, Ham- swede, Rostock, Stuttgart i.a.) as well as in Nephrotic Syndrome:
Treatment and Risks:
Situation
The nephrotic syndrom is characterized by a Some children relapse only once or twice a 2 – 5 of 100,000 children develop an idio- high loss of protein via urine. Urine purifies the body from many organic waste products quickly by prednisone. Other little patients but contains normally only a smallest trace have three or more relapses a year and de- of protein. By massive proteinuria in connec- velop severe prednisone dependence. This tion with nephrotic syndrome albumin level frequent relapsing may lead to kidney fail- in the blood decreases and oedema develop ure. These are the difficult cases of the good chance for full recovery. Still, with Minimal Change Nephrotic Syndrome, which some patients the disease persists to adult- are treated currently with long term immuno- By massive proteinuria and hereby develop- ing oedema the nephrotic syndrome is typi- Individual therapy, close to trigger events
cally characterized by a quick increase in Children not responding to steroids (less as well as complementary medical treat-
weight, sometimes several kilograms within than 5 % of the cases) develop scaring of ment may help to avoid problems like
the kidneys and thus suffer from limited kid- ney function or even kidney failure. These Steroid Sensible Minimal Change Nephrotic quickly; but it is very often the case that the Syndrome, the Steroid Resistant Nephrotic In today’s hospital situation with its enor- mous cost pressure and lack of personnel sclerosis may destroy kidney function and often little room is left for basic research

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