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17 year old Daughter just dx with hemochromatosis

Posted , 5 users are following.

yo_33197
yo_33197

I am wondering if there is someone else who is or has dealt with this condition at this young age. She will be undergoing a series of test in 2 weeks. 

1 like, 9 replies

9 Replies

  • Griffalo
    Griffalo yo_33197

    Posted

    Hi, sorry to hear your daughter is going through this, it's awful to see our children ill. My daughter is 11 and has been diagnosed in having one faulty gene for juvenile HH, but still presents all the symptoms of someone with 2 faulty genes so has had all the tests and is undergoing treatment. So if I can help with anything I will?

    What has the doctors told you about her condition?

    • yo_33197
      yo_33197 Griffalo

      Posted

      We haven't been told too much just yet. She is going for abdominal and pelvic ultrasounds in 2 weeks. She has not been feeling well lately, tired, no energy and pain in her right side. Once we get all the results we will get the treatment plan. We were told that it's rare in teenage girls.....
    • Griffalo
      Griffalo yo_33197

      Posted

      Yes it is rare in young children especially girls as symptoms don't usually present themselves until a much later age due to periods etc.

      Has she had the genetic testing done and been diagnosed yet or are you still waiting?

    • yo_33197
      yo_33197 Griffalo

      Posted

      Genetic testing is next Tuesday, Dr said that she can't see what else it could be because her iron level are so high. Also concerned as she has pain in the liver area. She just doesn't appear healthy like she was a few months ago. 
    • Griffalo
      Griffalo yo_33197

      Posted

      What are her levels? My daughters were 385 when she started her treatment, not as high as many people on here but causing her problems all the same. She's been having venesections every month for almost a year now and we're down to 98 at the last count, they would like her around the 50 mark.

      When they were at their highest she was vomiting, having joint pain and swelling, stomach pains, headaches and more. We are under the liver specialist in Birmingham as she had iron loading in her liver. They told her she will need yearly MRI scans to double check her organs are clear.

      Genetic testing did take up to 6 months to come back, so don't be alarmed if you haven't heard anything. Where are you from if you don't mind me asking? I'm UK based.

    • yo_33197
      yo_33197 Griffalo

      Posted

      I was in shock initially with the suspected dx so I didn't ask the exact numbers. She just said she was way outside the normal range. We are from the province of PEI in Canada. I was told the results of the gene testing would take about 2 weeks which is pretty good. We will get the results of the ultrasounds which is scheduled on the 5th of April around mid April. 
    • Griffalo
      Griffalo yo_33197

      Posted

      Not too long to wait then, let me know how she goes. If there is anything else I can help with let me know and I will try my best
  • Jenne
    Jenne yo_33197

    Posted

    Yes right here!! lol. I'm 15 and I was diagnosed with hereditary hemochromatosis in September. I've gotten used to it but I hate how I'm so young and that my disease is so rare for someone this young. 
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