Ex-Wilson's Sufferers

Hi guys,

My name is Iain, I'm from Scotland. I was diagnosed with Wilson's Disease when I was 13 years old (I'm 21 now). I underwent liver transplantation in February 2001, three months after being diagnosed with Wilson's Disease. Having quickly browsed this site, it seems that transplantation isn't as immediate an outcome for everyone else as it was for me.

I'd love to hear about your issues with Wilson's Disease ( I distinctly remember hating my hands seizing up when trying to make a sandwich) or with the transplant process. Hopefully I can provide some kind of experience for Wilson's sufferers, or perhaps transplantees can give me some advice.

Anyway, I had Wilson's Disease, underwent transplantation and now no longer have Wilson's Disease. Although my elder brother and sister are Wilson's carriers, it's good to have the affliction of Wilson's out of my life.

Joining a forum about Wilson's Disease is quite something for someone from Scotland seeing as fewer than fifty people from Scotland suffer from the disease.

Cheers,

Iain

By lucinda
Posted November 8, 2007 at 4:53 am
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Hi Iain,

I am 32 from England and have just been told that i have wilson disease, What was you symptons? and how bad did you get before the tranplant?
I have been given no medication or advice since being told, i was only told to moderate things!
I am really worrying thinking i'm ok now but in 5 or so years i might not be and i'm a mum of 2 boys and need to know what to expect in the long term.

You say your brother and sister are carriers does that mean they have no symptons?

Doctors in England seem to know nothing about it, which does not help.

Would appreciate your knowledge about this diesease.

Thanks

Lucinda

By iain_atkinson_1986
Posted November 8, 2007 at 12:52 pm
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My symptoms started maybe a year before I was diagnosed with Wilson's Disease. At first I'd get spasms in my hands and feet, then I noticed that pitting oedema noticeable on my ankles. Then around two months before I was diagnosed, I noticed that the whites of my eyes were yellow. I knew something was REALLY wrong when I started having liver failures - I would get tunnel vision, be unable to speak and would go into a ferocious cold sweat.

I went into hospitable at the end of November 1999 and it took around a month for a doctor (weirdly enough his second name was Wilson) to say conclusively that I was suffering from Wilson's Disease. I deteriorated throughout December and January, having to take ten or so different medications, the most important being penicillamine.

Towards the end of January I was put on the emergency waiting list for a liver but stabilised slightly and was bumped down to a lower list. My consultant was of the opinion that a transplant was inevitable in the long run and putting it off would be ill-advised and that the quality of life I would have post-transplant would be far higher than if I suffered with Wilson's. I was sent home from Birmingham Sick Kids and a liver came up ten days later and had the transplant on the first of February 2000.

All in all, it was a very rapid decline as I went from playing rugby in mid-November to having the transplant just over two months later. I remember how poor peoples' knowledge of Wilson's Disease was amongst the medical profession but it is a very rare disease in the UK (more so than in the USA I believe).

My brother and sister are Wilson's Carriers and suffer no immediately discernible symptoms. However, their livers operate at around 70% capacity but are in no danger of it affecting their day-to-day lives.

I assume you've been told to lay off the sodium (bread and salt)? I remember how good it was to have salt for the first time in two months once I'd had my transplant.

Iain

By Rose5
Posted November 9, 2007 at 10:24 pm
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Thanks for sharing your story Iain..........sounds alot like what my daughter has gone through....we find out monday how bad her liver is......

just a question............isnt wilsons disease for life??
Are you taking the zinc?

take care and stay safe xx
Rose

By mgraper1
Posted November 13, 2007 at 9:11 am
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Dear Lucinda
If you have been officially diagnosed with Wilson disease, it is imperative that you begin treatment immediately. There are very good WD doctors in England. Who do you see currently? Please let me know if you would like a referral

Mary Graper
WDA President

By iain_atkinson_1986
Posted November 15, 2007 at 7:25 pm
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Sorry for the late reply Rose!

No, Wilson's disease stems from some kind of genetic mutation within the liver. If you have a liver transplant, the Wilson's is gone and, as far as I know, gone for good.

As I've had a transplant, I take two anti-rejection medications as well as magnesium and calcium supplements.

I hope your daughter is doing well,

Iain

By -Melissa-
Posted November 15, 2007 at 8:16 pm
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Iain,

If your siblings are only carriers of the WD mutated gene they wouldn't actually become symptomatic. They would need to have two copies (one from mom and one from dad) of the effected/mutated gene.

Also, the only things that you really need to restrict in diet is liver (from animals), shellfish and no alcohol. You can eat the liver and shellfish in moderation.

Wilsons Disease is rare everywhere, not just in the UK.

Liver transplantation is only in severe cases. It isnt for a means to "get rid" of the disease. So in your post you made it sound like its great to have a transplant, but in all reality if you had one without really needing one that would be worse, since you run the risk of rejection.

Melissa

By iain_atkinson_1986
Posted November 15, 2007 at 8:53 pm
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Melissa,

I guess I must have been categorised as a 'severe case' seeing as I received a transplant. Mind you, my Consultants did tell me that I wouldn't have survived to my 14th birthday had I not received the transplant when I was 13.

I did suffer from rejection, on more than one occasion. However, I have found the quality of life post-transplantation exponentially greater than that of when I was suffering from Wilson's Disease. I know of a few people who have lived, and died, with WIlson's Disease. I guess I was too young to question the rhetoric of transplantation, but the view that I stood a far better chance of surviving with a liver transplant than with Wilson's Disease was conveyed upon me heavily by various Consultants.

It was also brought to my attention that the programme of treatment in the UK differs to that of the USA because of the divergence of welfare provision between the two states. I was put on to a comparatively new drug (in 2000) called Mycophenolate Mofetil. At the time it would have cost £16 (roughly $30) per pill and, to this day, I take six of them on top of Tacrolimus.

And, again, I'm basing my statement that Wilson's Disease is more common in the USA than in the UK on the knowledge of my Consultants. They know more about us on the subject so I'm not going to overly-challenge their judgement.

Iain

By Rose5
Posted November 15, 2007 at 9:00 pm
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oh wow.........i didnt know that

thanks iain for replying........i have only been learning about Wilsons since the beginning of this month when daughter was diagnosed -- still hadnt learnt all that side of it as i been too busy worrying about treatment for now and getting daughter sorted

Yeah daughter is ok but i am getting very impatient with the hospital specialist government - they are all duck shoving and blaming each other why the Trientine isnt here yet...grrr...if only i was a doc lol
but apart from that she is up and down at the moment, the pen is affecting her blood and HER.........but mostly her happy self....x

stay safe all xx

By iain_atkinson_1986
Posted November 15, 2007 at 9:19 pm
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As Melissa's comment has shown, I guess it's wrong to try to draw overarching conclusions about Wilson's. Indeed, I suppose each case is specific to the person.

I don't suppose the genetic side of the disease is really important. The main thing is that your daughter gets better. If your daughter has been cooped up in a hospital room for a while, I can understand why she would be up and down. I'm not sure how old your daughter is but, if she is as young as I was, I can understand the frustration of lying around in a hospital.

Iain

By sarah_u
Posted June 7, 2008 at 6:51 pm
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Hi everyone,

I'm 18 years old now, and was diagnosed with Wilson's disease when I was 12. I got a transplant when I was 17, only half a year ago, and I'm so happy to be an 'ex-Wilson's Sufferer'. My symptoms included yellow eyes and skin, weight loss, odd behavior, depression, mania, psychosis, and social anxiety.

I can't describe how much I hated Wilson's disease. I hated all the symptoms, that it makes you lose cognitive abilities, causes brain atrophy, odd behaviour, and eventually retardation if left untreated. I thought then that life was pointless for me if that was what I would become.

I also can't describe how happy, lucky, and free I felt after I knew I would never have to worry about it or being different. Everyone around me seemed to care about my liver more than my brain though and I felt the other way around. I guess it depends on the case though, I'm just lucky to not have had many liver symptoms.

Welcome to Inspire!

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