Thrombosis team undertaking a new study of APS

[traceylou]

Have received a letter from London asking for patients with APS to donate blood for further investigations...has anyone else received the same??? Interesting

[happyfeet]

I received a reauest yesterday. Think it is a good thimg to take part in, might not help us already with it but hopes for the future. I have lupus also, and this year it moved to .y brain, causing strokes and leavimg numerous clots on my brain. If givimg a bit of blood is going to be useful, then I live in hope that a diverse nu.ber will domate and that .easures can be foind for future sufferers. Sorry for my message, but these combined diseases have left me wanting to end it all. Despite support from family. I feel I am taking up oxygen that so.eone useful deserves. Take care and tome everyone.x

[Hidden]

Hi Traceylou

Is the letter regarding the RAPS - Rivaroxaban in APS trial or just for general use in the future? And is it from Tommies, UCL or Imperial? I know the three main London centres are collaborating for future research so it would be good if you could help

[traceylou]

It is from St.Thomas' heamo but relates just to further investigations and taking blood tests for further investigation and analisis....many thanks for any input

[top_hole]

i HiTraceylou,just in case it,s of any interest, If you clic on Google and put Dr. Timothy Vyse Lupus study, it gives you a whole lot of information about their Genetics study at Hammersmith hospital. It is a family thing and all the info is there ,his phone number as well and e.mail. He,s been doing it for a long time and I did ask early on if he,d do Hughes s , as well, and he said yes , but you must have one living parent.

[AlisonT2]

Hi yes I received my letter on Wednesday and am more than happy to the blood they usually take blood when I go for my appointment so whats the difference. I would be more than happy to help with any research into APS. I have two daughters (one of whom I believe has APS) and four grandchildren who may end up having this illness so anything I can do to to help my family and future generations is all good. I personally have lived in a world of ignorance for too long

[SassyOne]

Great news! I would be willing but is this study only in the UK? I'm in Canada. Anything we can do to help fill in the blanks and draw parallels would be a great help. It's one step forward and two step back whenever I need help from the medical field. Raising awareness around the world is one of the many things we need to save & improve lives.I don't even bother telling my Dr anything I'm sure he thinks I'm nuts. I could fi a page with the problems I have on a regular basis. The only thing that works for me is to believe that everything will be ok, if I get stressed out I will be a train wreck.

I wonder what they plan to learn from us?

[AlisonT2 in reply to SassyOne]

Hi SassyOne Judging from the letter I think at the moment it is only being carried out at St Thomas' but I may be thinking that as I am under Prof Hunt at St Thomas' it is all confidential and will only be shared with other research bodies after extensive checks have been made and it appears that Prof Hunt and Dr Karen Breen are heading the research

[aps-and-ph-sufferer]

Also received the letter earlier in the week. I saw my APS consultant on Friday and it sounds easy, an extra tube of blood when you have blood tests, and contributing to research in APS. For me it's a no-brainer, I'm in.

[ClareSteggles]

Yea i got the letter asking if would give blood for research reasons. As far as i know it just at St Thomas and Proff Hunts team. It a no brainer my view so i am in.