Hearing about others' experiences is just the tonic (weird, I know; sory!)

Gosh, I so hope this isn't a piece of major tactlesness - I do mean it in the best posible way as a thank you to everyone for sharing their experiences!

When I went through all the things I did (see my blog about TIAs and misdiagnosis with postantal psychosis below) I was furious about what happend to me and the stroke I had and the mistreatment that should not have happened...

But I count myself an optimist (glass not only half full, but moreover on its way back to the bar for a flirty refill - ok, with lime soda these days, but small price to pay for still being here) and have always tried to find cheer even in the blackest of events. But can't tell you what a comfort it is to know that other people have had shocking experiences too - so often much worse than mine. (At least I have an extremely good lawyer on my side now!) One of those situatiosn when you think you're the only one until something like this forum comes along.

PS - had a look at Prof Hughes' clip on Youtube and saw the annual sindigh that is held for APS suffereers who have now got cvhildren. Does anyone know if this is only open to women who were treated at St T's? Would love to meet h other women who had undiagnosd APS when their kids were born...

Hugs and happiness (and a big round of lime sodas) to all

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  • Cheers - glad we could help!!

    Tx

  • Hello Eliza and welcome to this blog and questions forum :)

    There is a Hughes Syndrome Patients Forum every year held in May which is open to members and non members of the Hughes Syndrome Foundation.

    I always recommend everyone join the foundation hughes-syndrome.org/members... you can join online and pay anually by direct debit which was a big help for me as I have a terrible memory.

    I have attended 6 or 7 of these annual meeting and learn something new everytime I go and think it so worth while as you also get to meet other patients and sometimes meet patients that you have been "speaking" to online in the flesh face to face which is really nice.

    There are Hughes Support Group Leaders in most counties and you will find the names and areas where support is available either by logging onto the Hughes Syndrome Foundation website or you can look on the Hughes support forum and as you are a registered member you'll be able to read the HUGHES SYNDROME FOUNDATION NEWS on the following web address z10.invisionfree.com/Hughes...

    London holds a support group meeting every month at St Thomas hospital in the cafe and the London Support Group Leader is Ann Sumra. For more information about Support Group Leaders or meetings please contact Kate Hindle, the Manager of the Foundation.

    Hope this helps honey I know that having Hughes Syndrome can sometimes make you feel very isolated.

    xx Hazel595

  • Hi, yes it does sound wrong but it does make us feel a lot better when we realise we are not going mad with the symptoms we get,

    I once started a post on another Hughes site & was called ' the symptoms olympics' & on it I put the symptoms I get & asked if anyone else got the same? loads of APS people replied & it was fasinating!! but at the same time you wished they wernt going through it too.......

    Hope you are ok & just know...you are not alone xx

  • Hi Eliza,

    I feel guilty at times being pleased there are others out their, but is just so good to know you not alone. That others feel the same and understand. I wish people didn`t have to go through such awful things on their journey to diagnosis and treatment. I also wish the rest of the world had some understanding. Expecting to much I know, is an uphill battle getting people to understand my sons Autism and lots of people have heard of Autism, Still keep teaching!!!!!!

    Take care hugs Jessielou xxx

  • Hi there, I had my first child (now 17 and 6 foot 1) before my diagnosis after 5 failed pregnancies. Matt was delivered at 35 wks by c/section as he had run out of room! He was the largest baby ever in special care but still covered in that downy stuff premmies have and a whopping 9lb 6! After 1 night and a good check up for lung function we went back to normal ward for the rest of our stay. 4 more failed pregnancies and 10 years passed before diagnosis then 1 more miscarriage before Caitlin came along with heparin therapy to help another early whopper at 8lb 10 5 years ago. Sadly after all those years of hormonal and pregnancy abuse my body has said "enough" and I haven't really been fully well since. But I am nauseatingly positive, my heroine is Pollyanna and it sounds like you play the Glad Game too. I'm not quite ready to type out my whole story yet, I will soon, but my mind isn't straight at the moment and the chronology is very disordered so I'm trying to organise it. I haven't joined a forum before because I wanted to pretend I wasn't affected by APS but very recently have had to accept how profoundly I am affected. I'm looking forward (I never look back, no point!) to sharing and supporting

    Sharon x

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