help i keep asking a big question but it gets nowhere

Hi all

I was diagnosed 11yrs ago and it was recommended that my children were screened for a wonky prothrombin gene and if they were negative then they were ok and wouldn't develop hughes is this right or wrong or can they still end up with hughes my 15 yr old is now gettting really migraines but has proved negative for the genetic abnormality

anyone able to help

shakes

7 Replies

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  • Hi it is good to keep an eye, my daughter has 'probably hughes due to symptoms and severe migraines for two years.... and has passed SLE lupus test, she too 15. Also funny turns daily on top. A classic age for this to show up. My young son 13 had a migraine for nearly two years... and was too ill for school, he currently has passed not tests. At the age of 47, despite clinical incidents, I have not passed a hughes test, and am classed seronegative, but have passed a lupus test and have other disease. I hope this helps. We all try not to worry, but I know that is difficult. Mary F x

  • Not sure that we are talking about the same disorder. I thought the prothombin issue was different to APLS? As far as I know there isn't a genetic marker for apls, however you can develop antibodies at any time.

    So would think that they could go on to develop apls after a negative result.

  • Hi

    I went through this with my daughter. I am sure Tassie is right That there are 2 disorders here.

    Although there are clusters in families, it is not proven that there is a genetic/hereditary link for APS. I don't know about prothrombin disorders. I would be very careful about having children tested. My daughter was negative for APS, but was refused mortgage insurance just because she had had the test. it can be a millstone for them. Turned out her headaches/migraines were hormonal.

    Good luck with it all

    Ann

  • Wow Ann...that is just awful that your daughter was refused insurance because of a test...and she was negative. What a shame.

  • I have recently joined a study at Duke University that is doing the study on genetic links for APS. I'm not real sure if I have it after talking with them, but I had 10 miscarriages & was told 20 years ago I had an elevation of antibodies. I'm not sure what tests were done or what antibodies I have, but after finding out about APS recently, I am surely going to find out. It will answer a lot of heath problems I have been having for the past 10 years. My son has chronic migraines & am going to find out if he has it, too.

  • hi you may be intreested in this poll hughes-syndrome.healthunloc...

    paddy

  • Unfortunately a bit late in your case, but a warning for others. I also have a genetic clotting disorder, which my specialist at time of diagnosis advised should NOT be tested for in my children until such time as it became necessary to do so - primarily for insurance reasons.

    Fortunately my kids have had continuous cover since birth and we will ensure that remains the case so there can never be a pre-existing condition.

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