New to this site: I wasn't aware APS... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Dot69 profile image
14 Replies

I wasn't aware APS could be hereditary, I was diagnosed in October after many tests after having a stroke in July 2015 which I find can happen when not picked up much earlier. I'm taking warfarin, and seem to have got the dosage right at long last. I'm so pleased to have found this site as its not been easy looking/asking for information on APS

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Dot69 profile image
Dot69
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14 Replies
Lure2 profile image
Lure2

What a nice picture of a beautiful lady!

Kerstin in Stockholm

Dot69 profile image
Dot69 in reply to Lure2

Very kind of you I love to run, not fast but I get to the finish, after my stroke I never thought I would be able to again.

Dot69 profile image
Dot69

Very kind of you, I love to run even if it isn't fast 😊

MaryF profile image
MaryFAdministrator

Hi there and welcome, where are you located? The disease does seem to run in a pattern in some families but often other autoimmune diseases are there among relatives also. MaryF

Dot69 profile image
Dot69 in reply to MaryF

Im in the UK it's interesting about hereditary as none if the professionals have mentioned this and I have children

MaryF profile image
MaryFAdministrator in reply to Dot69

It so far is not classed as hereditary, however there is a clear pattern in my family, including my children. MaryF

amy1808 profile image
amy1808 in reply to MaryF

Clear pattern on mine too Mary x

CaliforniaGail profile image
CaliforniaGail in reply to Dot69

Clear pattern of autoimmune diseases in mine too. Mother and aunt RA, sister MS, me APS diagnosed for 5 years and recently Lupus with it attacking my lungs. I told my children and nieces and nephews -- try and cut out processed foods!! israel21c.org/7-food-additi...

rolfe profile image
rolfe

Hi Dot69 I too was diagnosed with aps after a stroke in 2012 I also have developed o Sjogrens syndrome Symptoms of which are similar to Hughes (aps) are you in the uk ? I am also taking Warfarin and Hydroxychloroquine you are right there's not a great deal of info at all but its good we have this forum as people here are very helpful

Dot69 profile image
Dot69 in reply to rolfe

I'm in the UK in Yorkshire, this forum is quite reassuring in some aspects and makes APS quite "the norm" for us who have to deal with this syndrome

amy1808 profile image
amy1808

Gosh your doing well running , o can just about walk , welcome to our supportive little family x

Lure2 profile image
Lure2

I forgot to say "Welcome" to our site. Hope you will stay here as we learn so much from eachother.

Kerstin

stargazer5761 profile image
stargazer5761

hi welcome on here , you get some very good advice from the people on here , every ones very friendly and helpful , and we all have hughes syndrome and the other auto immune syndromes , and I m also from west yorkshire

Tofino5 profile image
Tofino5

Love your photo! And I agree with the other posts, you are beautiful!

My hematologist told me it can be acquired through a mutation, or it can be hereditary. I don't know which I am but sometimes have a laugh over being a mutant :-)

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