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LearningaboutWD
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Hi I'm a student that just found out that I have wilson's disease. I would like to know how you got throught these hard times. I would like to know how you got through it. My parents don't really know how to go throught it, and I know that this is hard time for them. If I could have one reply that would be nice.

Some of my symptoms that told me that I had wilson's is that I had a copper ring around my eye. I also have yellow skin and I found out that my liver is going down the drain. (its really bad). So please tell me how you could go thorught this time. I need to know to boost my family spirit.

Explore topics in this discussion:

Wilson disease Liver transplant

16 replies

Heron

Welcome to the list.
I got through it partly by reading everything on the Wilson's Disease Association site at http://www.wilsonsdisease.org/ . I recommend showing it to your parents too.

The hardest part was before I knew what I had. Once I got the right treatment, things started getting better. Do you have a doctor that you trust?

Good luck with everything!

Ann

Ajit

Hi
The best part is that u know you have WD. get in touch as much as you can with ur dr and the people on this list.
I don't have WD but i care for someone very near to me. And i have seen/heard many people living a better that normal life with WD. only thing u have to accept it and get the right treatment on TIME. Best wishes to you.
AKC

mom2six

Aren't you the same person who just wrote they are doing a report for school on WD and need of personal stories??? Excuse me, but do you really have WD or are you just trying to get people to open up to you?

-Melissa-

mom2six--

I thought and wondered the same thing....

McVeggie

its the same person dear mom2six ;p~

LearningaboutWD

yes I'm the same person but my teacher is trying to make me find someone else with WD. Yes I do have it, and I'm getting treated for it. I posted that, so I could get a story the first one but the second one is just for my own knowledge of how other families took this news, and what they did. NOne of this will ever make it on my report.

McVeggie

Your teacher?????? what teacher is this? you better not be mocking us here! I don't think any teacher will force anyone with wilson disease to do a book report on themselves. I don't see any of my teacher forcing me to do a book report on my condition. The fact is that is not there job to tell you to do that. I think you are just BSing your way here in hope of a sympathy vote so we will tell you stories.

LearningaboutWD

its a report over different disease, and I thought of takeing this subject before I found out that I had it

cybo

If you do have wilsons, I'm not saying you dont. How would of you picked a disease to wright about that is so rare before you were diagnosed? Besides diagnoses takes several weeks to over a month to get a definite prognoses, and if I remember highschool, most reports were due in less time then that. If you are for real please answer some of the ? asked of you. nad some of us might help you out.

McVeggie

if its a report over different disease I don't think you will need a extensive interview over how it affects the patient. its a simple 2 pages report not a 5 page research report!! I have gone to high school myself too.... so which is it? i think you are just mocking us here. if you really have the disease the information on this forum would have been enough for you to complete your reports. it's when you don't have the disease cant grasp a concept of it. You would make a statement such as the information on here isn't enough for me to finish my report. so go away! Why should i help you on your report? When you dont even show the slicest decency of respecting the patient who actually have WD!!

Scribner

For those who have replied in a negative way - shame on you! This site is to be motivational and helpful. In the past few months I have yet to run into someone who is anything but sincere and compasionate about BOTH my children having Wilson's. Isn't this site to share knowledge - some of you need to lighten up - the world is not out to get you!!! I could care less if this information is for a school report or not - my daughter has done one this year in college on Wilsons Disease (from her personal experience-diagnosed in August) and on a liver transplant (her brother with Wilsons-had a transplant 9-1-08). The community I live in never knew a thing about the disease and neither did my children or myslef - now I dare say there probably is a small number of people who don't - why - because they care and are interested and are SINCERE. Even if this report is just a report and not on a presonal note - feel free to contact me - I don't know tons, but what I do know, I would be more than happy to share with anyone that is interested. And, if you are sincere and do have Wilson's - I AM SO SORRY for the negative feedback you have recieved - when I first got on this site I was frightened and felt so alone and it helped me - reach out - that is my best advice to you.

mom2six

I think you might have misunderstood where all the "negativety" came from when posting what we did to Learningabout WD on the message board.

It stems from another discussion he had wrote that I copied below. It is like 2 totally different people. Yes, we all have stories that we are more then willing to share with others. But the way this person comes across we are a bit leery. All our hearts and souls go into our experience and traumtic stories. I can only speak for myself but I dont want it to turn into a mockery by some person and that seems what he is doing.

I'm a student in need of info

By LearningaboutWD
Posted January 9, 2009 at 6:32 am · 6 replies
In Personal stories

Sup people. I'm a student that needs help with personal stories. If you could share some that would be really nice. I learned a few things doing some looking on the internet.

I need a really good grade so plz help me. I'm despereate. Your persenol stories would be shared with my teacher, and my fellow classmate.

PLZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ ZZZZZZZ
reply. Thx

McVeggie

excuse me? i am more then willing to share my story if it didn't come out as a mockery on us... if both of your children has the disease you should know better what they went through in school... coz i sure hell did have my fair share of being pick on in high school.... the fact that your children get to do a report on them its great. they get to know about their condition more in depth. When i was diagnosed with the disease there isnt much information I can find on the web nor in the library... so considered yourself lucky. Sorry if you feel that I am a bitch at ya! But I am a bitch... just not in the mood for another mockery. I will not let anyone make fun of me anymore.

-Melissa-

Chill out McVeggie. Mom2six was defending what we were saying about the other girl seeming fishy. And she just posted the girls other post and how the tone of it was so much different then this current one. Relax!!

Heron

I think McVeggie was replying to Scribner rather than to Mom2six, an example of how things can get confused on message boards.

McVeggie, I'm glad that you won't let anyone make fun of you anymore. Sometimes I think about my ancestors with WD (I'm sure there were some back there at some point, even though no one else in my family has been diagnosed with it) and how they probably were mocked and labeled as crazy, lazy, clumsy, or witches or sinners or victims of sorcery because no one had the explanation for what was going on until recently. And I think about how amazingly lucky I am to live at a time when people understand the disease enough to treat it.

But I still think that LearningAboutWD could be for real and just having a hard time saying directly that he or she has WD, especially if his or her family is not accepting the situation. So LAWD, feel free to email me directly if you want ahunter@indra.com.

Ann

McVeggie

Thanks Ann, and yes I was replying on Scribner's comment. Sorry if I offend anyone else. Ann yes there are no one else in my family that has the disease as well. I am greatful that the doctor finally had a diagnosis for me. Sorry mom2six i wasn't yelling at ya.

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