hi im a new member and wondered if an... - Hughes Syndrome A...
hi im a new member and wondered if anyone is from south wales...finding it very difficult to get a good rheummy whom understands aps...
I live in New South Wales, but on the other side of the world in Australia
with luck there will be someone a little closer to you.
lucky1
Hello there, at some point, other members will come on and talk to you, there are others in Wales, who will spot your post! Welcome and best wishes. Mary F
There is a South Wales support group voluntarily led by Rhianwen Mills: rhianwen123@btinternet.com. Please note that Rhianwen is a patient too and kindly volunteers her time.
thanks for the info x
i liv in newport south wales where abouts are you ???????? i only c a haemotolgist no rheumotologist as no1 understands my concerns either ......
ebbw vale.....i see an ass of rheummy...gotta get new one fast...lol....but cant get info as he serves newport and gwent hopefully i get one at the heath...im not sure hun if any of them understand unless of course it was happening to them then they would want answers...xx
I live in south Wales. I see a consultant called Dr C Rhys-Dillon. She's very understanding of me, I have antibodies an symptoms but no clot yet thankfully, she's always looking for new research to help and listens really well. I see her through rct health board but I'm sure she works in Cardiff too 
is she rheummy or haemo...??she sounds fab...can i borrow her...lol..
She's a Rheumy!
She is very good. She makes me feel less crazy and doesn't just put everything down to "getting older" like my gp does. I see her at dewi sant too. She listens and records and checks up on things you've said before.
Hi I'm new to this site but am so happy I've found it .I am 39. Years old and live in Swansea I have an appointment with Dr C Rhys- Dillon on thursday .After reading your blogs I'm happier to meet her an hope to get some answers ,I'm paying privately cos don't want my GP to think I know it all, and am diagnosing myself ! I hope this is the answer to my prayers after ticking so many boxes of the symptoms and suffering a mini stroke last week thanks again
Thanks for this excellent piece of info Tannyah - you've already helped other patients and a couple have rung back to sing her praises too
HI
i know this is an old post , but do you still see Dr c rhys dillon she sounds lovely. i am the same as you positive no clot.
Regards Dexters south Wales
Hi natirish! (and everyone else!)
I live in South Wales near to Caerphilly, although i'm originally from Merthyr Tydfil.
Like Tannyah, I see Dr C Rhys-Dillon at Dewi Sant Hospital in Pontypridd (I initially saw her privately in Cardiff), and I agree, she's lovely. However i'm not a very straight forward case - I have symptoms, family history and a good response to anti-coagulation, but no antibodies or clots, so she has a rather cautious approach to me! However, she is approachable, and she listens and that's worth it's weight in gold.
Whereabouts are you, natrish?
Just found your location, natrish, and I think we've previously chatted on a FB APS forum!
Hiya Natirish,
I'm new to this forum only a couple of months. I live in Pontypridd and have APS and LUPUS (SLE). I was diagnosed at 18 and now I'm 41 and on warfarin for life. I have a Haematologist Consultant in the Health hospital called Dr Reynolds. She is very good too. I go to the Professor Bloom Clinic which is linked to Hemophilia. I've not heard of the other Consultant in Dewi Sant but try and get into see her if you can. It is hard to go and see my GP as I never see the same person and they really don't understand the condition. Dr Raymond in the Heath is very understanding and listens. I don't bother the Hematology Team that much but when I appear in Clinic without an appointment she knows there is something wrong with me and sees me straight away. She's good. I hope you manage to get someone good as they are hard to find. When you do-stick with them. I hope this has been of some help and the best of luck.
hi jazzie...i no doc raymond well...my son is haemophliac....i no weird....but i dont like the docs much there to be honest an i not keen on collins...my son goes there and hates seeing him...lol...all bad memories ther...lol....my mum saw raymond to as she also has bleeding prob and lost 18 pints of blood so our cases are not straight forward...mutated gene they told me.....thanks for ur help hun...xx
Once again I have been referred to St Thom and although its a long way for me to travel, its worth it, knowing at least they have a specialist unit. My consultants here are lovely but they tend to waver alot from APS and they now need guidance hence my referral.
I tend to stay in London the night before to reenergise myself.
Hope you get some luck with finding a understanding consultant.
Tanyah - just wanted to say thank you for sharing the information about your doctor.
I have passed the details of Dr Celine Rhys-Dillon onto other patients who have rang the charity looking for help and they have both found her excellent.
In case anyone else wants her details they are: vale-healthcare.com/rheumat....
Thanks again Tanyah - one woman had been trying to find someone for 15 years so was amazingly happy
No problem! You're welcome. I was referred to her a few years back and she was determined to find out my problems. I honestly can't speak highly enough of her. I suppose being lucky enough to have met her first, I didn't realise people had so many problems finding someone good.
Hi Kate, just to point out, the Rheumatologist's name is Dr Ceril Rhys-Dillon, not Celine.
Us Welsh like to confuse with our strange names! 
IMO you need a hematologist, not a rheumy. Rheumies dispense drugs - particularly steroids, which 99% of us simply don't need. You need to keep your INR between 3 and 4, which most rheumies never heard of, and you need to be sure to have your thyroid checked for hypothyroid.
My TSH was 9 after my diagnosis 15 years ago. Now it's between 3 and 4.
Don't give up!
The problem with Hughes is that it can span two disciplines - rheumatology and haematology so the trick is finding a specialist in one of these in your area. Unfortunately, there is no search facility available on Dr Fosters to cover this yet so we can only rely on helping each other and passing on good info.
Hi, I live in South Wales, and was referred to St. Thomas by my stroke consultant. I get yearly review from them but, in the past year have been referred to Dr. Julian Nash in Heath Hospital. He has been excellent in monitoring my condition over the past year, and don't know how would have managed without his team. Was being seen weekly at one point. I have APS, Sjogren's Syndrome, and symptoms of lupus. The lupus symptoms have been main problem this year, but Dr. Nash has great interest in APS, and is known by a number of doctors at St. Thomas Hospital, London. He is a Consultant Rheumatologist, and you can look him up on-line. Kate Hindle gave you my e-mail Rhianwen123 but it has now changed to r_mills8@sky.com if you need to contact for further information. I wish you all the best, and hope you find someone to provide you with the support you need in near future. Bye Rhian.
Hi Rhian - I didn't know that you had changed your email so will make a note of it for future reference.
To back up what Rhian said, a colleague of mine with the same problems recently saw Dr Julian Nash, and speaks VERY highly of him. I understand that he is very knowledgable of the seronegative aspect of Hughes Syndrome.
