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Please excuse my intrusion of your board. My son needs to interview someone with Wilson's disease. He is a freshman in high school. He is doing the paper in his biology class. Would any of you be willing to help?
Hello,
I would certainly like to help your son w/ his report in any way I can.
I was diagnosed with Wilson's Disease over 30 years ago, at age 22. By the time I was diagnosed, I had totally lost my speech, ability to walk, dress myself, was drooling, and was overcome w/ tremors.
I also suffered from the psychiatric symptoms that affect about 1/3 of Wilson's patients.
Thirty years later, I just received my teaching certificate this month!! I own my own home, and truly enjoy life. The journey with W.D. took about 15 years, and changed my life and ambitions in countless ways.
Have your son email me at my gmail address if he would like help with his paper. I rarely go onto this website as I am so busy substitute teaching and job- hunting.
manickmutt@gmail.com
Lorie Spohn
Thank you for offering to help. The teacher only gave them one day to get contact info for the person they were going to interview. By the time I found you it was too late :( Thanks again!
We have no known history of Wilson's - what I mean is, this it is totally new to us - we have traced back as far as the living members on both sides of our family can go and don't know of anyone that had Wilson's. Obviously it is some where, but I guess we won't be able to trace it. We do not know if the kids father tested or not (we do not keep in contact)- the specialists tell us that both myself and their father have to be carriers. My sister got tested and was negative for being a carrier. I would be curious to see the results if both my mother and father would get tested - just to know which side it comes from - not that it would change anything, but I could have cousins, etc... that may carry the gene and it is definately good information for them to know - in the event they have "wierd" symptoms!
Scribner,
Is the father of your children also a carrier? Did you have relatives, mother or father who were carriers?
I had sibs who had WD, diagnosed in the 50's/60's. I have never been tested, nor my children and I now believe we should be tested.
Hi. I would also be interested in answering any questions to help with your sons paper. My son (19 years old) received a transplant 9-1-08 due to the severity of Wilson's (never became ill until July 08 - we never had a clue there was such a disease). My daughter (18 years old) also tested positive for Wilson's and is on medication to get rid of the excess copper and hopefully it works before complications develop with her. I was tested, and with no surprise, carry one gene mutation. I think others on this site would be willing to help you too - I feel there cannot be enough awarness out there. How did your son ever happen to stumble upon Wilson's? Do you have a relative or something with it? Just curious because it is so rare. Anyway.... I am babbling...... if you would like to know more, feel free to email me at scribnerb@centurytel.net.
I look forward to hearing from your son. Hope he will get good grades with the help I may be able give him with his paper.
Thank you so very much! I'll have him email you after school.
I may be of help but I am in New Jersey and I have difficulty in speaking over the telephone. If your son would like to know about my WD he can contact me via email on kalapikpatel@yahoo.com or if he prefers to call he can call me on 732 968 0652 or my cell is 732 912 8604.
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