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.
5 comments:
Hi Arie,
Nice to see you got your blog going. Hope you get some responses from people interested in Danon's disease.
Eric
Hi Arie.
We were happy to find your blog as we are searching the web for information about Danon Disease. We have a 9 year old boy who has been tested and they found that he lacked the LAMP 2 proteine. He has been gene tested for Danon, and we await the results. Last year he had a full heart examination, and everything was good. So we are quite interested in everything we can find about the disease. Especially how it manifests. Our son has some muscle weakness, but it only shows when he's running, and he complains a bit about muscle pain in his legs in the evening. We tested him for allergies when they found increased CK.
So far we haven't found any symptoms in the family, but he has a sister and a brother, who both seems healthy. They will test us(me and the 2 other children)later, when his results are ready.
We will continue reading your blog and update you.
Hi bergmans
I remember that when i was 9 years old,that running was difficult,when i tried to run , my knees did give in sometimes. jumping was not easy either. however when i was 20 i was in the dutch army for 1.5 years.
over the last 5 years i am going to thai shi to stabilize my balance.
And that works well.
Hi there, I am in the USA and found your blog from a friend in Norway (her child has Danons). I myself have Danon's as do my two sons ages 8yrs old and 4yrs old. My mom and two sisters as well as a brother have Danon's. we are all in a research program in the USA with Dr. Matthew Taylor in Aurora, Colorado. I am glad you blog on your disease. WE have been looking for others out there. So no heart issues for you or your siblings? My boys have Hypertrophic Cardiomyopathy but very little at this time. My brother had to have a new heart at age 23yrs old. He is now 36yrs of age and doing ok. He is very weak with his muscles and it's hard for him to walk. He is also legally blind in his right eye and can't see very well out of his left eye. We believe this to be the Danon's Disease. Do you have any eye problems? My 8yr old complains of his leg hurting and will hop around sometimes. I wonder if this is the reason. Thank you for blogging! The Marincik family in California USA
Dear Arie
I am a physician in the USA doing research on Danon disease. I learned about you from the 'Living One Day at a Time' comment family who just visited our research center.
Based on current understanding of Danon disease (which is very limited) your case would be unusual since the condition has happened much later in life for you.
I wonder if you'd be willing to contact me directly so I can learn more about your story and diganosis.
Email: matthew.taylor@ucdenver.edu
Danon website: www.danondisease.org
Regards-MT
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