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Hughes Syndrome - APS Support

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Hey y'all


Hi all

Sorry I've been away for so long. Just thought I'd come bouncing back on here to update you all - let you know I'm still alive etc!

So how are you all? I am feeling particularly cheerful - I think it's because the sun is out and I have started running again... I really feel like I am looking after my body a bit better! So this morning at 5.45 I was out running with my muttos! Happy days - definitely not so much fun in the winter!!

I don't really have any health news - which in itself i a great thing... My horrid colposcopies are down to annually, my skin is still cancer free, my transplant (Kevin) is going to be 9 this year - where does the time go???, I am still injecting clexane... And can you believe that I was diagnosed over 13 years ago!?

in real life (that is, not work!!) I am still working (very) full time for a consultancy in London, I walk the dogs for about 1.5 hours a day, my horse retired but I am having dressage lessons, I have started running again, I am seeing a chap who is mad keen on bikes so I might be doing some of that... I have just got back from holiday in Egypt; diving, snorkelling, quad biking, star gazing, walking about in the mountains... I'm hoping to go to Naples later in the year to learn how to make real pizza and sail round the islands... to put it simply - I feel back! and I'm so excited about it.

I hope you are all well and happy - I would love to hear from you.

Lots of love


13 Replies

Hi - Tasch-- great to hear from you again-- WELCOME HOME ---- our woman of the WORLD:-) Gotta go for now many things going on . -------------------- jet

Hidden in reply to jetjetjet

Thanks Jet

I would love to talk more about my travels and adventures but I'm not sure that this is the right forum - I would love people to know that you CAN do all this stuff - maybe not now, but if you work towards your goals you really can do anything!



that's my friend Lawrence

mine's better! haha




Hey Tasch! Glad to hear you're feeling back to your old self - goes to show that we can all 'peak and trough' - it's great when you peak again :)

You enjoy yourself - you deserve it! Kxx

Hidden in reply to Hidden

Hi Kate

thought I had replied to you! Yes, I'm back and feeling good, ready to take on the world.... so if you need anything, think i could help in some way again then shout... email me?

Hope you are well and happy


Tasch, regarding posts about your adventures, accomplishments and ambitions.

We have, several times a week, panicky sounding posts from the terrified newly diagnosed. They go to this site for info and support, but they also read about depressing developments in how thus disease sometimes evolves over time. They seem to freak out. Which is understandable.

So positive posts would be super, super helpful and supportive. That APLS road has a lot of possible detours and branches. Our readers need to know that not all of these paths lead to gloomy destinations.

So do tell us all about your adventures! I for one would love to read them!


Hidden in reply to GinaD


Thanks for that - I will try and put up some stories soon.



Thank you for your inspiring post. I've recently been diagnosed with APS and one of the things that worried me the most was going on warfarin, as I too have horses, and couldn't bear the thought of not riding again, because of the higher risk. On balancing everything up I have continued, albeit, limiting myself to gentle hacks now.

Its was really good to read your positive post.

Hidden in reply to purdy30


Thanks for your feedback - I will try to write some more about the stuff I get up to - I am very active and love to be outside...

Perhaps that ought to be a poll?

If there is anything you want to chat about then please shout - Either ask a question or message me directly...

I bought my first horse after my transplant and used to compete at cross country with him (and he was an arab!!!). I now do dressage and a few SJ lessons too. I couldn't be without horses!

Take care and enjoy the beautiful weekend!



Hi there great to see you back in town... it seems like a hundred years ago,.. since that day at HU learning what we might be doing on here! Glad to here about your life with bells on. Mary F x

Hidden in reply to MaryF

Hi Mary

Thanks for the welcome - nice to see you're still here!! That was a lifetime ago wasn't it??

Hope you and your family are all well and happy.


Hi tasch

So glad to see life is doing well for you keep us informed and as always hi Kevin (((waves))))

Really happy to see things going well


Hidden in reply to paddyandlin

Thanks Paddy

Hope things are going well for you et famille too.


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