Sticky Blood-Hughes Syndrome Support
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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?

8 Replies

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



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



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


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.


You know that 10 years ago when I was 1st '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.


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 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 heart problems....low blood pressure....low cholesterol etc.


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


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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