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Sticky Blood-Hughes Syndrome Support
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Amazing Partners and it's not all bad :-)

Hi there,

It's been a while since I was on here last but just wanted to say it means so much to have an understanding wife/husband/ partner.

Many times over the last couple of years, my rock Miranda, has put up with my foibles due to APS and I wanted to give a shout out to all those partners that are there for their lesser halves.

You're all stars!!

I'm lucky at the mo. I currently take 6-7mg of warfarin and although I had multiple p.e.s on both upper and lower lobes of both lungs and diagnosed with Primary APS, I'm able too pretty much carry on as normal. I work 7.30 to 5.50 as a joinery manager working both on the shop floor and in the office. I still play sports, badminton and low contact football and often at weekends diy-ing so it's not all doom and gloom. I still get occasional headaches, aching and painfull hips/joints and every now and then fatigue washes over me.

Having a strong mind and especially a strong partner is a great thing to have :-)

See you all at the patients day on the 18th May!

4 Replies

Thanks for this post - I agree, my husband is a star too. May I ask what the patients day on 18th May is?



Are you aware of Hughes Syndrome Charity? They have a patients day at St Thomas hospital in London and Mr Hughes himself is there too.

Details can be found here hughes-syndrome.org/get-inv...

It's an afternoon with talks about the latest findings/ treatments on APS.

Tickets can be bought on the link above :-)

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Good for you, I am married to a superstar also! MaryF


I'm so glad u have strong mind, as I usually do too! As far as my Oerter goes, he was just DX'd with ALZHEIMERS! I lost my leg to CAPS/Catastrophic APS! I have no leg, no help! Recently my sister has been my one and only support and of course this blog! Mary and Kerstin and all the administrators have been awesome on here! The people who have it r the real Heros and I thank them all for their unwavering support!

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