Do I have the right to know?
By ronaldinu
@ronaldinu (12422)
Malta
March 18, 2010 9:13am CST
Last week I had an appointment with a neurologist, or better my wife dragged me to the doctor's visit. After reading a book, she was worried stiff, that parkinson's disease is related with Aspergers. Our nine year old son has been diagnosed as mild Aspergers a few years ago. Aspergers is a condition where a person (a child or an adult) has difficult in communication and doing social interaction. I told her Immediatedly that the book is rubbish, anybody can say or write whatever he believes in a book. As usual I was accused that I don't care less about our son etc etc. My uncle has been diagnosed with Parkinson's at the age of 58. So my wife was preoccupied that it could be something genetic and that both me and my son could be effected. I told her that Parkinsons affect people with old age and has nothing to do with genetics. I thought it is far fetched to link a nine year old son with a 58 year old's illness. Asperger's do have poor motor cordination but it has nothing to do with Parkinsons.
Recently I tripped on a carpet and I bumped my head into a wall. Ouch it hurts! I think she was so worried that my wife booked an appointment on that day. I was a bit tired it was 1am in the morning and I was not paying attention, I just slipped, but there was no need for drama. After several tests the neurologist confirmed what I said that Parkinsons has nothing to do with Aspergers and that both me and my son are healthy. He told my wife that she does not have to worry at all.
About three years ago, my eldest cousin died at the age of 45 years with muscular dystrophy or at least that is what my family told me. So I gave in to go to a neurologist with this case in mind. I wanted to be certain that I don't have anything like that. As soon as I mentioned my cousin's name, the doctor seemed to be familiar with the case and denied that the cause of my cousin's death was Muscular Dystrophy. He said it was something else. I remained perplexed. Malta is a very small island. We have one central governemnt hospital (which is a state of the art thought sometimes the service lacks to be desired)., so I was not surprised at all that the neurologist wsa familiar of my cousin's case.
Why my relatives have lied about my cousin's cause of death? Why they did not want us to know the truth? What are they hiding from us? I tried to ask further questions to the neurologist but he was tight lipped and did not utter another word because of privacy issues. I was concerned that muscular dystrophy could be genetic but the doctor said that my cousin's illness had nothing to do with musuclar dystrophy and that it was not genetical at all. It was a rare illness, an unfortunate case but he stopped there without giving further details.
Do you think I have the right to know the real cause of death of my cousin's?
9 people like this
7 responses
@Wizzywig (7847)
•
18 Mar 10
Obviously, the doctor could not go into details of your cousin's condition. I guess its very helpful if your doctor is already aware of your family's medical history because they can be on the look out for anything which you could be genetically predisposed to.
It does seem odd that your relatives should lie to you particularly since it could have caused you a lot of concern over the possibility that you, or your son could be affected. However, you do at least have the doctors assurance that it was not genetic. Presumably, the family have their reasons. I do not share details of my health with other family members - but, I would if there was something major that I felt may be genetic.
1 person likes this
@umit_umit (1984)
• India
18 Mar 10
oh my god these disease are so scary,i have no idea of these but if its so dangerous then you should be going to the experts and do accordingly dear!
@ronaldinu (12422)
• Malta
18 Mar 10
I have went to a specialist to verify and he issued a certificate of good health. Thanks for your reply
1 person likes this
@GardenGerty (169489)
• United States
18 Mar 10
You only have a right to know if the family is willing to give the information to you. They maybe did not know at the time that it was not MD. There are a number of illnesses that come under the umbrella of MD, just as Asperbers comes under the umbrella of Autism Spectrum Disorders. I can name one that I know of first hand--ALS, a fairly uncommon disease. It is considered non hereditary, unless it appears in more than one generation of a family. It is also called Motor Neuron Disease in some countries. Is there someone in the family that you are close to who would be willing to share information with you?
@ronaldinu (12422)
• Malta
18 Mar 10
It might be accidental it might be done on purpose. i dont know why they hid their relative's illness... I will have a good talk with my father. And I ll see how it goes from there.
@ronaldinu (12422)
• Malta
19 Mar 10
The doctor was not concerned with muscular dystrophy (even if one of my cousins had it) as it would be highly unlikely that it could affect my son. I am not sure if I would be directly hit by it since we are first cousins.
@JenInTN (27514)
• United States
20 Mar 10
It would be great if you could find out but privacy policies are very strict. it is here anyway..I'm not sure about where you are. If the doc thinks you have the same possible illness, he will compare your case to your cousins though. It does seem odd that you weren't informed by your family as to what was relly wrong with him. Maybe you could question them a bit.
@artsyfartsygypsy (755)
• Canada
18 Mar 10
You most definatly have the right to know if it can affect you and your family. If its something genetic than they shouldnt have lied to you. I dont understand why they lied in the fist place. I mean. you are all family why the shame and secrets?
1 person likes this
@Hatley (163772)
• Garden Grove, California
18 Mar 10
Yes ronaldinu you sure do as he is related to you and so ma ny yucky diseases are inherited just as my moms diabetes I inherited, and she never told us she had it.If I had known I would have lost a lot of weight and ate differently and probably not have become diabetic at all. So many things we inherit are just the tendency to get it and if we can make ourself really healthy we may avoid those things completely. but we need to know if we have inherited the tendency for various diseases so we
can protect our health

@ronaldinu (12422)
• Malta
18 Mar 10
I think that we are what we eat but half of what we are comes from the genes. So I would greatly appreciate it and have my mind at rest if I knew the truth about my cousin.
Thanks for your reply





