Hughes Syndrome Study: My name is... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Hughes Syndrome Study

Harriet70 profile image

My name is Harriet and I am an undergraduate psychology student at Birkbeck, University of London. I am undertaking a study about Hughes Syndrome as part of final year project. I am therefore looking for participants between the age of 18 and 60, who have been diagnosed with Hughes Syndrome for at least a year, who are taking Warfarin long-term (for a minimum of three months) and who would be willing to talk about their experience of living with the disorder.

The interview will last no longer than one hour and participants will be entered into a draw to win a £20 gift voucher of their choice as a token of appreciation for taking part in the study.

I am looking for participants who are preferably London based; an online Skype interview can be arranged for those who would like to take part but do not live locally, or if more convenient.

All data collected will be anonymous and confidential, and the research has been approved by the Department of Psychological Sciences Research Ethics Committee of Birkbeck, University of London.

If you would like to part in the study, please contact me either by email or telephone and I will be happy to send you further information.

Mob:07783 401884

Thank you for taking the time to read this post.


16 Replies
MaryF profile image

Thank you for re posting this, after the liaison with the charity, wishing you luck, I can't do this myself, as am not on Warfarin. MaryF

Vespa1 profile image
Vespa1 in reply to MaryF

My husband is on warfarin but is age 61 sept gone is that out of your bracket? We live in the midlands.

Harriet70 profile image
Harriet70 in reply to Vespa1

Thank you for your post. I'm afraid that I am only looking for participants aged 18-60.

Harriet70 profile image
Harriet70 in reply to Vespa1

Hi, I am really sorry but yes, your husband is out of my age range.

I'm in California, age 40 I was on Coumadin for roughly 4 years became resistant and stroked through, I've been on Xeralto since late August 2014 and been very succesful, fingers crossed. I'm happy to help, I know you wanted London based participants but I'm a Skype call away. Always eager to help. Good luck! Staci Luna

Harriet70 profile image
Harriet70 in reply to staciluna

Thank you for your message and offer to take part in my study. Yes, I am looking for participants who are London based so unfortunately you are a little far away for me! Best wishes. Harriet

Hi Harriet

I am 56, I seemed to have lived with this condition for ever but have been diagnosed for at least 4 years. I would be happy to help with your project although I am on Acenocoumarol and not Warfarin long term. I live in Medway but am in London approximately once a month and will be there next 7th December as I help with Bariatric Education sessions at St Thomas' . The session ends around 1pm so am free from around 1.30 pm if that is any use to you.

Best wishes


I'm 25 and was on warfarin for five years from the age of 17. Would be happy to help via Skype if any use?

My hubby is 35 he was diagnosed nearly 2 years ago after having a stroke. He's taking warfarin for the forseable future.

Hi Harriett

I live in London, age 56 and I have been on warfarin since I was diagnosed with Hughes in 2009. I have emailed you

I have sent you a email

Thank you for your interest in Hughes syndrome

I have sent you an email but you didn't reply

Hi I'm 62 and live in New York! I've had this disease my whole life along with another VERY RARE blood disease called Polycythemia Vera! There is one other person with same as me! The same gene is involved with PV as APS! An unusual thing! I know I'm over age, but just wanted to tell you this is so very rare and if you ever wanted to talk to me feel free! I lost my leg to this! My first blood clot to lung at age 24 and many others after that! Including 2 Tia's! Good Luck on ur studu!

Hi, I've been on warfarin for about 9 years - Since I was diagnosed with APS in early 2006 after a blood clot in August 2005. I live in the Midlands but have Skype. I'm 46.

I'm aged 58 on warfarin and live in Hertfordshire so could be there in an hour I've been on warfarin for about 6 years and will be for life I'm happy to help

I am 54 live in westyorkeshire I had a stroke in Feb 2014 was told it was APS in July and started warfarin then if that's any good x

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