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Hughes Syndrome APS Forum

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Is Hughs syndrome/Aps hereditary?, my son complains of a stinging heart sometimes!, age 9.

pixie2011 profile image
5 Replies

Its not all the time but comes in clusters and then he is fine.Should I get him tested?.Trouble is he has sensory processing problems, querie Aspergers. He will not accept a blood test easily.

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pixie2011
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MaryF profile image
MaryFAdministrator

Hi, this can run in families but not always, however often does not show up in blood tests in children until teenage years or past that.  However mine have this, but that was not one of their symptoms, best to watch and wait with obviously reporting anything worrying to GP and Paediatrician.    At some point blood tests will have to be done. MaryF

pixie2011 profile image
pixie2011 in reply to MaryF

Thankyou. I will mention it to his Gp but I remember the GPs not having much of an idea about this when I was pregnant!. What symptoms do your children have?(if you don't mind me asking it may make sense to relate). Or how do they differ in children to adults? Thanks.

MaryF profile image
MaryFAdministrator in reply to pixie2011

Severe migraines, cognition problems at times, severe fatigue, strange episodes, poor circulation, dizziness, blurred vision.  Please look at the symptoms list on the HSF charity website,   My daughter also has Lupus. MaryF

pixie2011 profile image
pixie2011

Ok I don't think he has any of these but cognitive function and poor working memory which is due to his dyslexia and SPD. Thankyou.

Debbweb01 profile image
Debbweb01

I was DX'd in October 2016! I made my older sister get tested! She was POSITIVE FOR IT AND now DX'd with neuropathy! Also has thyroid problems

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