Sticky Blood-Hughes Syndrome Support

Family Tree

I had a genetic counselling session with a neurologist. I copied my maternal family tree and under each relative I put what medical conditions I knew they had. It was easy to see a pattern forming. That copy is in my hospital medical notes. I also have a copy in my file at home which will be passed on through the family. I now know that Hughes has been passed on through my mother and her family. This information could be important in the future. Anyone else think this is a good idea?

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Yes Anje, it is a good idea, it has been suggested to me years' back after an appointment at London Bridge to draw out tree... mine came via my father's side! It can only enlighten a family situation if ever necessary. Good for you.

Mary F x

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Anje,

this is a fantastic idea and and not only be intresting for family and medics

paddy

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duke univesity is going to start on on my siblings in the begining of the new year, more so on my 3 other blood disorders than the aps, also wiating on mri just done yesterday for avn- results may take a bit doc on vacation. - jet

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Anje please don't think this is addressed to you personally it certainly isn't

but, I get really really annoyed and p'd off when asked about my family tree..

Once is fine but after that it's on my records that I don't have a clue, have never known and am not likely to know! I am sure I am not alone to be in this situation.

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You know that 10 years ago when I was 1st diagnosed....my 'specialist' told me it was not hereditory!! then again he did say men didn't get it & dont eat anyhing with fish oils or veg' like cabbage!!! ( which when I went for a dietition's oppinion of this I was told you could but in moderation.) oh (this is when I then got dismissed for getting a 2nd oppinion from the 1st hos'!)

Yes it is interseting, I know many of my family has had strokes & heart problems! but...would they have anyway?

I would like to know because of my son's future & their kids too, better off knowing ahead.

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I was diagnosed in 2010...I was feeling unwell for years...dizzy, weak, 'brain fog"

I live in NE US and local doctors thought I had Lyme Disease....I was fortunate to find a Rheumatologist who diagnosed me with "sticky blood" syndrome before I got a stroke! In reviewing family history....my paternal grandmother had a stroke when she was around my age early 60's....deteriorated quickly ..dementia...and died in a psychiatric hospital....1960...As I remember family stories...her early symptoms were the same as mine...."feeling fainty and dizzy".I believe I inherited this auto-immune disorder from her....I am in otherwise good health...no heart problems....low blood pressure....low cholesterol etc.

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When i was dx several years ago , My doctor asked me if anyone in My family had any blood clots,

i rememberd when i was younger My grandmother would get many clots in her legs!! She also had a heart attack in her 50's and a slight stroke!! My Mom had a blood clot in her lungs.

So it comes from my Mom's side wish i knew more about my mother side , but growing up didnt get to know her siblings ( my parents divorced) when i was only 8 , and My father raised all of us.

My two daughters have awful migraines one daughter has had 3 miscarriages and wonder if they my have it too!!

knowing our family tree seems to be a good idea for us and our children

Take care ,Sandy

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Thank you all for your thoughts. My hobby is family history and having that copy tree in my notes saves a lot of explaining. Plus I was lucky to know all my mum's brothers/sisters. I think this condition came from my maternal grandmother as she died aged 53 from heart failure. Of course, it could be my grandfather's side and they were from Scotland so a little more difficult to know about them.

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