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Hello Martin, Are you in the UK? I would recommend St. Thomas's in London if you are.
Sure others will have ideas for you too. Best Wishes,
Lola
 

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hi martin

I agree with lola,st thomas' is an excellent hospital,a lot of our members are patients there & speak very highly of it.

I am sorry your daughter is having such a bad time,must be awful especially with a baby to look after too.you must be very worried about her.

I'm sorry I can't help more..can I suggest also posting in the 'symptoms section' of the forum using a title regarding liver problems?you will probably get more responses..I hope other members can offer you some helpful advice.

good luck to your daughter,I hope she can get some answers.
take care..karen x
 

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Hi Martin
Dr Bruce at Manchester Royal Infirmary is a Rheumatologist and Lupus Specialist. I know people travel from all over the country to see him. He is well known in his field and has worked at a Lupus Clinic in Canada for two years. His Lupus Specialist Nurse is also very helpful. I don't think it is too far from West Yorkshire.

Good luck

Meryl
 

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Martin, If you wanted your Daughter to come to St. Thomas's they do have Patient Accommodation for those travelling a long way. It would mean she could travel one day and be seen the next or maybe even stay two nights if she had to. This would be free for her to stay and not too dear for anyone coming with her. I am nothing like as far away as you but I often do it this way.
Best Wishes,
Lola
 

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Martin,

I am sorry to hear your daughter is so unwell. It is good that she has family that is concerned about her. It is unusual for lupus to attack the bowels except when vasculitis is part of the disease process. I live in the USA and can't really comment on doctors in your country except an observation about St. Thomas. Patients get in fairly quickly for their initial appointment but the time lapse between that and following appointments is sometimes 6-9 months or longer. If you have private insurance or the money to pay private you might want to look into the Lupus Center in London. It was started by Dr. Graham Hughes when he retired from St. Thomas a little over a year ago.

I would go with your daughter to her GP and explain the urgency in finding a lupus specialist for your daughter. There are many treatments available these days. Do you know what your daughter is currently taking?

Let us know how she gets on.

Take care,
Karen
 

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Hello Martin

Leeds has a good reputation but I don't know if they have the very special expertise it sounds you need but you can always ask - the nearer the expert is to home the better or anyway to have somebody who would work along with St Thomas who are probably the most likely to have come across the trickiest cases.
There is an active Yorkshire support group - google ( lupus yorkshire ) or (Leeds Lupus centre)

I am very sorry about your situation and will be keeping your daughter and all of you in my thoughts, hoping with all my heart that helpful treatment can be found

http://www.leeds.ac.uk/medicine/musculoskeletal/connective.html

All the best
Clare
 

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Discussion Starter · #9 ·
Thanks everybody

Update:-
My Emma is going for chemotherapy on Fri, and as lomg as the bowel does not puncture she will hopefully come through, doctors description, " she's on a tightrope if she falls off she's finished " & as bad as that sounds at least I have more hope than I did when I posted my initial request, once again thanks for your advice & hopefully when I get my head round this I may be able to be of use to someone else.
Wishing you all, all the best.x
 

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I just wanted to wish you good luck with your daughter's appointment.

I will keep your daughter and your family in my prayers and wishing for a good outcome.

 

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Dear Martin

I will keep everything crossed for Emma that she responds to the proposed treatment. I wish you all the very best of luck and good wishes.

Sincerely
Joan:rose:
 

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i will also keep emma in my thoughts and prayers.



:getwell:
 

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Discussion Starter · #13 ·
on the mend

Hi everyone,
thankyou for your thoughts & prayers, it looks as if they have been answered, she seems to be making progress, & although there is still clots from her bowel, the doctors dont seem too bothered them, & seem to think things are starting to pick up.
Dodgy b*gg** this b*oo** Lupus thing. I will be visiting this site on a regular basis to keep my eye on you all, so all the very best, & if anybody needs to ask about anything at all, feel free to leave me a message.
God bless,
Martin
 

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DEar martin,
We are all here for you. Please post whenever you feel the need and please let us know when you have ANY news at all of how Emma is doing.
x Lola
 

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Martin thank you for keeping us all updated I hope Emma goes from strength to strength xxx hazel
 
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