In 1952 one of my sibs was diagnosed with WD and had portacaval shunt at SFU Hospital. The shunt did not work and he continued to have symptoms, vomiting blood, headaches, weakness, fatigue. He continued with followups at UCLA, this was before liver transplant, of course. Another of my siblings was diagnosed in 1959 or 1960, he was eventually treated with penicillin but to no avail. I lost another sibling who at age nine hemorraghed post tonsillectomy in 1944, he probably had the WD also.
All of the siblings diagnosed were male and none of the rest of remaining siblings (seven) have exhibited symptoms. This is 2009 and in 1990's ?, a year before the first liver transplant my family was told that we did not need to be tested. Now after reading so many posts, I am wondering if the remaining members of family (sibs) should be tested as well as grandchildren? Can anyone help with an answer?
I am sure there has been so much more research and information available and too bad there is not more publicity about the disease. Especially because of blended families.
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WD 1952
- By sisandbros
- Posted April 29, 2009 at 3:58 pm · 4 replies
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Weakness Wilson disease Esophageal varices Penicillin Liver transplant
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- By Heron
- Posted April 30, 2009 at 9:41 pm
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Hi,
I am sorry about your siblings.
Yes, it would be a good idea to get tested. WD can become symptomatic and then fatal at pretty much any age, and can be treated with a variety of meds. If one doesn't work, another often will. Most patients don't need a liver transplant as long as they take their meds. You might want to look at http://www.wilsonsdisease.org, which has lots of helpful information.
- By ruchkitt
- Posted May 1, 2009 at 1:39 am
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Hi, My two brothers both died of Wilson's Disease in 1997. I found it interesting that you said males are the ones who were diagnosed. So, the siblings who are living are they female? I know that WD is autosomal recessive. I have often wondered if there was a higher affinity. The odds for acquiring WD with two parents who are carries would be 1:4. I have been tested and so have my children. At the time that my brothers were diagnosed many of our first cousins were also tested. I think the test is fairly inexpensive. It is probably worth some piece of mind. I have wondered about having my children genetically tested to see if they are carriers. I do think that this would be a good piece of information for them prior to them having children. Kitt
- By sisandbros
- Posted May 3, 2009 at 2:09 am
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I had nine siblings, and now have three living, two bros and one sis. We were six males and four females, of those males, the two had WD and the third died of a hemorrahe post tonsillectomy at age nine, so probably was symptomatic of WD. The two bros who passed away exhibited the esophageal varices, and that is what prompted the diagnosis of WD. I have explored the WD website and also Mayo Clinic, and UCLA websites and have found some information which has been helpful. I am going to present what I have gleaned from these websites to my Internist and ask him for testing and also present info to my children who are adults and ask that they be tested also. To all of you out there with Wilson's, take your meds. I too miss my sibs profoundly as they were taken in their youth.
- By Heron
- Posted May 3, 2009 at 9:14 am
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I'm glad you are getting tested and recommending it to others in your family! I was diagnosed age 53 because my liver started to fall apart. Now I'm 61 and my liver is functioning relatively well, thanks to WD meds. Without them I suspect that I would be dead. So it's well worth getting tested!!!
Ann
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