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Biomarker for Diffuse Scleroderma skin has been discovered!


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Newbie, Just been diagnosed

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8 replies to this topic

#1 suealfie

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Posted 14 May 2012 - 05:56 AM

Hi, I've just been diagnosed with systemic scleroderma, just thought I'd join the band wagon.
Anyway must go off to work, self employed landscaper, fun as ever in the rain !!
Sue

#2 Amanda Thorpe

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Posted 15 May 2012 - 02:09 AM

Hello Sue

Welcome to the forums! How did you come to be diagnosed with systemic scleroderma and are you under the care of a scleroderma expert? The Royal Free in London is a centre of excellence for scleroderma and as patient there myself I can say they're marvellous!

You might also like to think about joining a local group, provided by the Scleroderma Society, you don't have to be a member of the Society to attend a group and you can attend one anywhere in the country!

Take care and keep posting.
Amanda Thorpe
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#3 Sandy B

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Posted 15 May 2012 - 04:35 AM

Hi Sue,

Sorry you have been diagnosed with systemic sclerosis, but welcome to the forums, I hope to hear more about you soon.

Sandy B

#4 Joelf

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Posted 15 May 2012 - 06:10 AM

Hi Sue,

Welcome to the forums!

Sorry to hear that you've been diagnosed with Scleroderma. As Amanda has advised, we do recommend that you consult a Scleroderma specialist as sadly many rheumatologists do not have the expertise to deal with this unusual and complex disease.

Do keep posting and let us know how you're faring.

Kind regards,

Jo Frowde
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#5 suealfie

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Posted 27 June 2012 - 04:13 PM

Hi all, thanks for the replies, sorry for the delay in coming back.
I was diagnosed about 15 years ago with Raynauds, but it's never been treated. A few years ago I had swollen joints on my right hand, general practitioner referred me to rheumatologist, but general practitioner then wrote to me to say bloods were ok and I didn't need to see the rheumatologist, so I didn't.
Anyway to cut a long story short, I had pleurisy 3 times in the space of six months,last year, so I asked to be referred to someone (self employed - can't keep having time off ill)
My current general practitioner looked through my history (mum had rheumatoid arthritis) and decided that I may have scleroderma, so he referred me to a chest consultant and rheumatologist, both of which have decided I have scleroderma (coupled with blood tests) had ECG - I have a heart, it is beating, thankfully it's fine, waiting for someone to tell me what the results of chest CT were, know it's going to show some damage as damage could be seen on the Xrays, been coughing now for 7 months - getting a bit boring !!
Stomach not great but I'm a real fruitaholic so assumed it was that.
Anyway got an appointment to see Prof. Denton on 27th July.
I've also read some of the horror stories but decided I can't change the outcome, so there's not much point worrying about what's going to happen, as mentioned by someone's mum could get hit by a bus !
Anyway no idea about any blood levels etc as no-one has told me yet what they are.
So there you have it. Watch this space.
Sue

#6 suealfie

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Posted 27 June 2012 - 04:17 PM

As an add-on to my last post I have to say the NHS have been great, from the GPs to the consultants I've seen so far, they've all been very supportive and all seem to be working together to figure out what to do with me.
Sue

#7 judyt

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Posted 27 June 2012 - 05:46 PM

Hi Sue,

Welcome from me too, great that you have an appointment with Prof. Denton. That is the best thing you could ever do to help yourself. Just wish I lived on your side of the world and could see somebody like that.

Actually, the time to see somebody like him would have been about 20 years ago when things were happening. However, I am now 68 and still going strong (I think), being well enough looked after considering very few people here have ever come across Scleroderma.

Best wishes for your upcoming appointment.

JudyT

#8 Joelf

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Posted 28 June 2012 - 05:19 AM

Hi Sue,

I'm pleased to hear that you've got an appointment with Prof. Denton; it really does help to be treated by someone who understands this complex and unusual disease. It is best to try and avoid, if possible, some of the horror stories on the internet and just read through our medical pages for up to date and accurate information.

Like you, I also have received excellent treatment on the NHS; I couldn't have had better if I'd gone privately, which is very refreshing!! ;)

Do please post when you've had your appointment on 27th July and let us know how you get on.

Kind regards,

Jo Frowde
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#9 Amanda Thorpe

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Posted 28 June 2012 - 11:09 AM

Hello Sue

Yep, I have to say of the NHS :you-rock: a far as my scleroderma treatment goes.

Keep us informed and try not to worry as it won't change the outcome, it is what it is, as one member used to say.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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International Scleroderma Network (ISN)