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My NPS Story
On the 4 st of April 1960 I was born in Reusel , a small village in the south of Holland (The Netherlands)
I was the second child of the family Wijten.
I was born with NPS but my parents knows this name only in 1970.
After my birth there was a little horror. A beautifull baby with abnormality’s. I was born with my feed backwards and I didn’t want to eat. So after one day I was admissioned in a hospital in Eindhoven. I get a gastric tube and a Orhopeadist Dr v Thiel was my practitioner of my disease.
He started with surgery in june 1960 and further in November 1961 (feet), june 1962 )knee), and january 1965 (knee). After these surgerys I was still not able to walk without orthosis.
At a visit on a swimming pool in Postel (Belgium) my parents had seen a girl walking with apparent the same disease. They spoke to the parents and they were asthonised that there 3 years older girl had the same disease as me.
The girl walked nevertheless without orthosis. The girl had surgery in Leuven Belgium. The parents of Ingrid told there Orthopeadist in Leuven of the meeting with us and they invited us to Leuven. On the15 st of april 1966 and 3 mai 1966 we went to Leuven and Dr Geens of the university of Leuven examined me, made X-ray’s and concluded that we had the same disease with the name Heredity ostea-onycho-dysplasie (HOOD) or Nail Patella Syndorme (NPS). We were a spontaneous mutation because our parents didn’t have the disease. The results were written in a medical paper of Belgium ( Acta orthp belg 1970 230- 254)
Dr Geens wrote a letter to Dr v Thiel in Holland how they treated there patient in Belgium with good results.
My parents were relieved of the willingness of Dr Geens and in Holland Dr v Thiel followed surgery in December 1967 (knee), 8 oktober 1970 (feet) and 19 oktober 1970 (knee) but the results were not hopeful. At a check up the colleague of Dr v Thiel named Dr Roeffen was not optimistic and proposed to stop the treatment.
My parents were very disappointed to hear this and decided to make a new appointment in Belgium where they were welcomed to Dr Geens at 18 augustus 1972.
After I took of my trousers Dr Geens told us immediately that the Orthopeadic in Holland didn’t follow his advice of surgery. They broke my bones several times but he adviced to move muscles and tendons was not done in Holland
My parents were disappointed and asked the medical insurance to visit an other hospital. The insurance agreed and the 10 st of January 1973 we goes to the Dr Ingwersen of the Diaconessen hospital in Eindhoven.
On the 13 st of february, 25 st of may and 5 st of june of 1973 there was surgery of my knees but the situation wasn’t stable and on the 16 st of oktober there was a new surgery but the result wasn’t satisfying. In 1975 and in 1977 my parents decided to go once again to Dr Geens but proposal to try to surgery in Belgium I refused because of the trouble and pain in the past in all the Dutch Hospitals.
In 1983 I had problems with the muscles at my back. I visited a rehabilitation specialist. He suggested to purchase a wheelchair to spare the muscles.
I got a wheelchair and became used to this iron thing after a few years. In 1988 we started in Bladel to play wheelchair basketbal.13 years we played very well and became two champion title in the first and promotion division of Holland. In 2001 the team was cancelled through three injured players.
In 2006 I had problems with my right arm. Straining through the way of walking of my c 6 vertebra gave me pain and radiation. I visited the physiotherapist and she was interested in my disease.
I decided to search on internet and there I visited several websites about NPS. I learned that people with NPS can be involved with a kidney disease. The incidence of Kidney disease in NPS is approximately 30-50%. This is usually more apparent later in life, although there are reports of renal problems in childhood. The earliest sign is usually the presence of protein in the urine. Kidney disease is progressive and potentially fatal. People with NPS should have regular urinalysis to monitor changes in kidney function. So I decided to test the urine and last week the result was that the protein is
to high in my urine (58). A bloodtest followed and this results are good even
the diabetes.
My doctor wil contact the nephrologe Dr Huysmans from the
university of Nijmegen to ask or my the protein problem must be treated by
medication.
It has recently become apparent that open angle glaucoma is also part of NPS. Open angle glaucoma can be described as a condition caused by progressive blockage of the outflow of fluid from the front chamber of the eyes. If this is left untreated, the increase in fluid pressure results in permanent irreversible damage to the optic nerve.
People with NPS should have regular ophthalmologic examinations since the progression of glaucoma can be limited by treatment. So I visited yesterday (15 oktober 2006) the ophthalmologist and the test results are left eye 14 and right eye 15.
The value may at least 21 so I am very happy with this result.
At the surfing on internet I met a kind man, Jaap Modderman, with NPS. He is the chairman of the committee of nephrology. I send him several e mails and telephoned with him to talk about NPS (visit
http://www.nvn.nl/wisselwerking/2006/1/10_13.pdf
)
On the 4 of November 2006 there is a theme day in Bunnik Holland about nephrology with
NPS diagnose.
I will be there and i am very excited to see a few people with
NPS. it will be confrontated because the most people with NPS can walk, dance
and I sit in an wheelchair, because the bad communication of the doctors in
the past.
But I can still be happy that I live and at this moment
I accepted my wheelchair.
Ingrid (the women of my NPS story) from Belgium and I
I met here after 40 years on 18-11-2006 in Belgium
(copyright ©
2006 Jan Wijten)
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