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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 elizabeth harris

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Posted 09 November 2008 - 02:45 AM

I was diagnosed with progressive systemic sclerosis 28 years ago after my 2nd traumatic premature birth (diagnosed from babies post mortem and my afterbirth) I have endured the entire gammit of the course of progression, Raynaud's,loss of finger digits(gangrene), toe ulcers, oesophagus and bowel involvements, heart disease, etc, but I have now got to the stage where I have been told that my arteries and blood vessels to my lower and upper limbs are now so obliterated by the scleroderma and don't have any options left, such as angioplasty. Is there anyone out there with similar problems and does anyone know of any help available?

I have regular iloprost infusions, but even they cause dvt's; the last was four years ago and I almost lost my arm. In return I can offer lots of practical tips and solutions to everyday difficulties due to my previous long history and survival spirit dealing with this disease.

Many thanks,

Elizabeth
(Sorry it is so long winded.)

#2 LisaBulman

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Posted 09 November 2008 - 03:01 AM

Hi Elizabeth,
Welcome to the forums! I am so sorry you had to find us here because of sclero but as you can see we area group of welcoming and friendly people. Unfortunately I don't have any first hand knowledge for you but hopefully someone else will. Do you have a sclero expert? If not you need to get an appointment with one.

Hugs,
Lisa
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#3 Sweet

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Posted 09 November 2008 - 03:46 AM

Hi Elizabeth,

Welcome my Love,

I'm really sorry for the extend this illness has grabbed you. In spite of it, you have a terrific spirit! I don't have any great advice for you at this point, but I did want to welcome you. I'm assuming you do see a sclero expert due to the extensive involvement you have, BUT if you are not, you need too. If you need help finding one, just give a shout.
Warm and gentle hugs,

Pamela
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#4 elizabeth harris

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Posted 09 November 2008 - 03:47 AM

dear Lis thank you for that reply, I don't know what a sclero expert is, I am under a rhuematology specialst and a vascular surgeon both at Liverpool Royal hospital and also Dr Kiely at the pulmonary hypertension unit at sheffields, royal Hallamshire hospital, does any of that count as a sclero expert?thank you elizabeth.

#5 elizabeth harris

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Posted 09 November 2008 - 03:50 AM

Dear Pamela, thank you for that lovely warm welcome, see my reply to Lisa about a sclero expert. many thanks. elizabeth.

#6 Sweet

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Posted 09 November 2008 - 03:55 AM

Hi Elizabeth,

I'm going to take a stab at giving you a couple of names based on the information you posted to Lisa. Let me know if I'm way off in regards to your location.

England:
Institution: University Hospital Aintree
3rd Floor Clinical Sciences Centre
Longmoor Lane
Liverpool L9 7AL
UK

Coordinating Investigator: Anderson, Marina MBChB, MSc, MRCP, PhD

Telephone Number: 44 151 529 5888

Institution: Leeds University, Academic Unit of Musculoskeletal Disease
Department of Rheumatology
Leeds General Infirmary
Great George Street
Leeds, West Yorkshire LS1 3EX
England

Coordinating Investigator: Professor Paul Emery, BA, MA, MBChir, MRCP, MD, FRCP

Other Local Participants: Cheryl Fernandes, MBChB, MRCP
Naomi Reay, RGN, RSCN, BSc

Fax Number: 44 113 39 22896




Institution: Rheumatic Diseases Centre
Unversity of Manchester
Eccles Old Road
Hope Hospital
Salford M6 8HD, UK

Coordinating Investigator: Herrick, Ariane, Dr.

Other Local Participants: Jayson, Malcolm I.V.

Telephone Number: 011-44-161-787-4265
Fax Number: 011-44-161-787-4687


Institution: Royal Free Hospital
Centre for Rheumatology
Rowland Hill Street
London, NW3 2PF

Coordinating Investigator: Black, Carol, M.D.

Telephone Number: 011 44 0 207 794 0432
Fax Number: 011-44 0 207 435 0143



Institution: Royal National Hospital for
Rheumatic Diseases
Upper Borough Walls
BATH BA1 1RL
ENGLAND

Coordinating Investigator: McHugh, Neil, FRACP

Other Local Participants: Maddison, Peter, Professor

Telephone Number: 011-44-1225-465941
Fax Number: 011-44-1225-421202
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#7 elizabeth harris

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Posted 09 November 2008 - 04:07 AM

Dear Pamela, Thank you so much for all that fantastic ammount of information,now as I have never been reffered to any of those people, if I contact them will it be going over my specialist rhuematologist at the roayal? I would hate to cause any trouble as I have a good relationship with my specialist, which is so important to me and as the disease is so advanced his motto is (as conservative treatment as possible) but I must confess now to feeling like a ticking bomb, if you understand my meaning.
many thanks again for your support in this matter. elizabeth .

#8 Sweet

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Posted 09 November 2008 - 04:13 AM

Hi Elizabeth,

I'm not sure how your health system works over there, but in my opinion as a patient we need to be our own advocate. It's your right to check out any avenue you want. If your doctor is the kind of person you'd hope he/she is, then they would understand you wanting another opinion. That is common place in medicine.
Let me know how it goes!
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#9 elizabeth harris

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Posted 09 November 2008 - 04:25 AM

Thank you for that Pamela, yes, your right I must be proactive and I will let you know how I get on, many thanks and warm wishes.
I will now keep you all in my thoughts, as our faiths are one of the most powerful tools we can call upon when subjected to illness of any sort.

#10 lizzie

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Posted 09 November 2008 - 06:31 AM

Hi Elizabeth, I'm a fellow UK resident. It is more difficult here to contact Consultants directly - there are very much rules of etiquette about seeing other doctors patients. I think the first step is for you to ask your rheumatologist if he thinks it might be helpful to refer you to someone who is a specialist in scleroderma. I know that the rheumatologists at the hospital I attend in the N of England have referred patients to the Royal Free for specialist opinion. He may well be happy to do so, but if he is not keen you could say that although you value his opinion you would really like to have a specialist opinion as well.
You could write him a letter if you feel akward bringing up the subject face to face.

P.S I actually used to live opposite someone called Elizabeth Harris when I was growing up in Leeds - just wondering if you are her!

Lizzie

#11 elizabeth harris

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Posted 09 November 2008 - 07:45 AM

Hi Lizzie, forgot tosay, no it wasn't me living in Leeds.

#12 Buttons

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Posted 09 November 2008 - 08:55 AM

Hi Elizabeth, I am also a fellow UK resident and like Lizzie says you would have to approach your consultant to ask if you can get a second opinion. I do believe that The Royal Free in London under Professor Chris Denton or Carol Black are specialists Raynauds & Scleroderma specialists. You could always have a look on theitr site as well.

Jensue

#13 Amanda Thorpe

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Posted 09 November 2008 - 12:26 PM

Hello Elizabeth

I am under Prof Chris Denton at the Royal Free and he is most excellent as are his staff and the team of sclero nurses that you can ring anyday for advice. Dame Carol Black is aslo here although I have never seen her.

I don't know how you're fixed for travelling but I recommend the Royal Free. Regarding a referral there, ring the sclero nurse advise line and ask them if your referral would be accepted. Can give you number and name if you PM me. Alternatively look at the website for the Royal Free.

Get an expert on board things are too critical for you to be worring about etiquitte.

Amanda
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#14 debonair susie

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Posted 09 November 2008 - 01:22 PM

Dear elizabeth,

I wish I could assist in some way...with the situation at hand. Unfortunately, I'm not in a position to, as I live in the states.

However, I wanted to let you know that I welcome you to our "very large family", here, on the Scleroderma Forum.
I've always found folks, here, to be so supportive/helpful in such special ways....Whether they have firsthand knowledge, or they have a loved one who is afflicted with what so many of us are.

I hope you "feel the love"...because we happen to have alot of BOTH to offer :rolleyes:

Special Hugs,
Susie
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#15 Peggy

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Posted 09 November 2008 - 01:44 PM

I don't have any words of wisdom or advice as I do not know how your country works but I just wanted you to know that I am thinking of you and I am so hoping you get some answers. You have paid the price for this horrible disease and deserve some relief. I will keep you in my thoughts and I so hope you are free of pain and are able to get the help you need.

Warm hugs,

Peggy

#16 canon

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Posted 09 November 2008 - 05:11 PM

Dear Elizabeth,

Just wanted to say welcome and so sorry for the many problems this disease has caused. Will keep you in my thoughts. I can sympathize and empathize with some of the problems but I do not have anything to add to what has been offered already. We welcome you and your courage and strength.

With gentle thoughts.

Judy
A happy heart is good medicine.

#17 lizzie

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Posted 09 November 2008 - 10:07 PM

Hi again Elizabeth

There is a procedure for getting a second opinion in the NHS system.

You can ask either your specialist or general practitioner to arrange it. They will refer you to another NHS doctor who specialises in treating your condition. You can also ask for a second opinion from a private doctor.

Having a second opinion doesn’t mean the second doctor will take over your care. If you want the new doctor to treat you, this has to be arranged between the doctors or hospitals.

Lizzie

#18 jefa

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Posted 09 November 2008 - 11:47 PM

Thanks for this information, Lizzie.

Here is the link to the NHS Choices website information on getting a second opinion:

How do I get a second opinion?
Warm wishes,
Jefa

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#19 elizabeth harris

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Posted 10 November 2008 - 12:56 AM

Thank you jensue, for the info, I am vaguely famililiar with the name Carol Black, as many years ago 28 in fact, I was asked to fill out a questionair, but never heard anything from it. she was then doing research into scleroderma and shehas obviously stayed in this field.
I will talk to my general practitioner to see what my options are before standing on any consultant toes.

Dear Amanda, Thank you so much for taking the time to give me that info, if you read my reply to jensue, you will see that I almost had contact with dame Carol Black,
You are so right about my situation coming before the ettiquette thing, I am going to see my general practitioner and if it means a journey to London, roll on, anything is worth a chance at this stage.
many thanks.

Dear susie, Thank you for the lovely warm and sincere welcome, this site has already lifted my spirits Thank fully, andif in return I can offer any support to other sufferers I am only to willing.
Having a supportive family is such a big help and my heart goes out to those wwho are not so fortunate.

Thank you Peggy for that lovely response and your kind wishes, so far I am overwhelmed with the members on this site, so kind and so caring, this is as important as medication sometimes more important.
many thanks.

Dear Judy,Thankyou for your warm welcome and support, as I have said on other replies, I am overwhelmed by the support offered, as you all know only to well, this disease can make you feel so isolated and misunderstood, so thankyou again for taking the time.

dear lizzie
I see from the time of your reply we share a symptom. not being able to sleep, usually due to pain, Thank goodness for sky t.v and a kettle.
Yes will make an appointment for my general practitioner and enquire if there is a way I could just ask at the royal free if they have experience of patients where the disease has oblitterated the arteries and blood vessells, nothing ventured nothing gained.

Dear jefa
Thank you for those links, I found them both informative and will make enquiries through my general practitioner, what options I can take.
Thank you again for taking the time to give the information.

many thanks and much love to all, Elizabeth.