My daughter has one of the rarest diseases in the world, maple syrup urine disease?

October 30, 2008 | By admin In New Diseases |
rare diseases
Debbie W

Now they say she may have Graves disease on top of it, could anyone tell me anything about it, thanks

Angina and Diet

4 Comments so far

  1. Suzy Q on October 31st, 2008

    is that when you eat so much maple syrup you start peeing it out? if it is that is gross ewwwwwwwwww

  2. notagain on October 31st, 2008

    both of these diseases have websites devoted to the cause please research the web it is quite extensive -type in the words of the disease on any search engine-google etc,then read the most official ones like national association for…..etc

  3. Aim on November 1st, 2008

    As far as Graves disease is concerned, if they do a thyroid ablation, she’ll probably end up hypothyroid. Since Graves disease is an autoimmune disease, the best thing to deal with this is to completely and totally supress the thyroid gland utilizing a thyroid replacement hormone.

    Doctors are very fond of T4 only drugs (synthroid, levothyroxine), and they are not that great, especially with autoimmune disorder. Assuming she’s a growing child, even more important that she has ALL the thyroid hormones, T4, T3, T2, T1, and calcitonin (for bones), and the only way to get this is with a dessicated thyroid replacement.

    I have never heard of maple syrup urine disease. I hope you’re getting good care and hang in there. What a tough thing to go through.

  4. hushnowjustplayit on November 2nd, 2008

    You are right it’s a relatively rare disease. It’s genetic and is most often seen in Mennonites.

    Your daughter has an inability to process certain chemicals. Her urine would smell like carmelized sugar, thus the name of the disease. It is treatable.

    Graves disease is hyperthyroidism. Graves disease means that all the processes in your daughter’s body are speeded up. Her heart beats faster, her metabolism is faster, and so forth. Medication can easily eliminate the symptoms of the disease.

    When you have questions, you should ask your daughter’s doctor. Ask them to explain to you what’s going in terms that you can understand. If they are a good doctor, they should take the time to explain it to you to your satisfaction.

    You can also learn more about the diseases online.

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