Hi,
I am Arie, 74 years old and I have live for the last 26 years in New- Zealand with my wife and family.
My arms and legs became paralyzed in a time span of 24 hours way back in 1982.
Willy my wife brought me to the GP and an hour later to the hospital.
The hospital staff did some tests, the most important one was a lumber-punction this brought them to the conclusion that I had Guiliam Barre Syndrome. Two weeks later I was send home. The strength in my legs and arms started to improve. Three months later, after daily physiotherapy I was able to stand and walk again while my hands where strong enough to hold a drawing pencil. So I went back to my drawing board.
My walking abilities started to improve the first 5 years after the diagnosis.
After that it became more and more difficult to walk up hill because the movement in my ankles became less and less.
In the meantime two of my brothers living in the Netherlands started to have walking difficulties as well. One brother started to have weaknesses in his limbs at least 25 years ago while for the other one it started 5 years ago. Both brothers were checked and tested by medical universities in Amsterdam and Rotterdam. Their conclusion a few years ago was that they both have Danon disease.
One of the doctors asked me a year ago if I was willing to participate in this research. After examining my blood structure, they came to the conclusion that I as well was blessed with "Danon disease"
My general health is good, blood pressure is under control and no heart problems.
I am walking with a stick because my legs start to loose strength. I find it difficult to step up and down curbs. I go two times a week to Tai Shi which helps me with my balance.
My aim is to gather as much information as possible about this illness to help others.
So I hope that every one who comes across Danon like, patients, doctors, physiotherapists etc
are willing to add their information and encouragement to this blog.
