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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 anne400

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Posted 29 July 2012 - 05:29 PM

I've suffered from Scleroderma for about 20 years, and actually have CREST syndrome, and it causes severe Raynauds, with my fingers going blue, white etc. For this I'm on Adalat (nifedipine.) I also have the gastro intestinal symptoms including bowel problems, which I have to see a specialist about this week. I find the winter a very difficult time, and it also increases the depression that I have due to Bipolar disorder, which I have also had for many years, before I was diagnosed with Scleroderma. I can't regulate my temperature properly, so I need to dress warmly even when often others are dressed in T-shirts!

I haven't told a lot of people that I have Scleroderma, because I find it hard to deal with. I was very happy to find this forum about Scleroderma, when I was browsing.

Anne

#2 Robyn Sims

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Posted 29 July 2012 - 06:06 PM

Hi Anne,

So pleased you found our forum, Welcome!!

Unfortunately it is very hard to explain scleroderma to your friends and family, sometimes people with scleroderma look so well. We certainly understand the layers of clothing you need to wear when others are dressed lightly.

Scleroderma Australia do have very good brochures that we can send you to give to friends. It explains scleroderma in as best we can without being too difficult to read. We would be very happy to send you some of these. We also have lots of other brochures we can send to you as well.

Soon the winter will be over, which is not the best time for scleroderma or bipolar! I can smell the blossoms coming out.

Thank you again for posting and look forward to getting to know you.

Kind regards

#3 Joelf

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Posted 30 July 2012 - 12:24 AM

Hi Anne,

Welcome to these forums!

I'm sorry to hear that you've been suffering with Scleroderma for the last 20 years; I'm a comparitive newcomer, having only been diagnosed for the last 3 years.

It certainly is a very difficult disease to explain to others; most of the people I've told about having Scleroderma were firstly intrigued and then extremely bored, as I do tend to do a subject to death!! ;) As Robyn has said, not least of the problem is that very often there are very little outward signs of the disease and I'm not the type that looks pale and interesting, rather I look disgustingly fit and healthy!! :lol: Nevertheless, I can really understand your feelings about the disease and I'm very pleased that you've found our forums and joined our community.

I've included links to our medical pages on Raynaud's and Gastrointestinal Involvement, which I hope you'll find interesting and informative. We also do recommend that our members, if possible, consult a Scleroderma specialist, as sadly many rheumatologists do not have the expertise and knowledge to deal with this complex disease.

Please do keep posting and let us know how you get on with your specialist appointment this week.

Kind regards,

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#4 anne400

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Posted 30 July 2012 - 03:32 PM

Hi Robyn and Jo,

Thanks for the warm welcome. I do see a sclero specialist in Melbourne usually once a year, and have the blood, echo, and breathing tests done at that time. It's a long day when you get them all done on one day but it's worth it to get them done. We are lucky to have the medical care that is available.

I really relate to looking well and feeling the opposite at times! My son knows I have an illness --scleroderma--but doesn't know much other than it affects the hands in the cold weather. Possibly a pamphlet would help, Robyn, to explain that it is more than that.

I will look up the links to the medical information that Jo posted, so far I have looked up the Raynauds one which was interesting. I will keep you posted as to how I go with my appointment on Thursday.

Anne

#5 Amanda Thorpe

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Posted 30 July 2012 - 03:39 PM

Hello Anne

Welcome to the forums! Have a look at our video about emotional adjustment for some tips on how to cope with a chronic illness. Talking about it here is an excellent way of dealing with things because we understand where you're coming from so talk away!

Take care.
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#6 judyt

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Posted 30 July 2012 - 03:49 PM

Hello Anne,

Welcome to the forums, nice to hear from another resident of this hemisphere!! It can be a lonely journey with this disease, but there are probably more of us about than we realise.

Like you, apart from the fatigue and sensitivity to cold, the other (unnoticeable) worry I have is incontinence caused by the damage to my bowel. Fortunately we do have practitioners in this part of the world now who will do SNS (sacral nerve stimulation) procedures and sometimes they can help. I hope you get the right advice when you see the specialist. I happened upon the right specialist completely by chance when the previous man I had been seeing retired, and in January this year I started the SNS implant procedure. I am still getting it sorted electronically but hopefully things will continue improving.

Of course, it didn't help that nobody recognised my problem for the first 36 years but now that I have proper care I am doing better and I hope you will too. I can't help but think that if I had lived in the US or UK I would have received better treatment earlier but thankfully we are catching up here and in Australia too.

Stay in touch with the Forum if you can, you will get a huge amount of information and support here.

Best wishes
Judyt

#7 Robyn Sims

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Posted 30 July 2012 - 04:33 PM

Hi again Anne,

There is a scleroderma clinic in Melbourne, two in fact, so you could also go on the database there which not only helps research, but also gives you a once a year further check.

If you send me a Register of Interest on the Scleroderma Australia website with your address I will send you all the information we have and this will help explain things to your son and others. It is very difficult to explain this disease to others.

Kind regards

#8 anne400

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Posted 30 July 2012 - 09:01 PM

Hi Judyt,

Thank you for being open and honest about how sclero affects you. I am sorry to hear that you have bowel problems on top of all the other effects that one gets with scleroderma. I also have incontinence resulting mainly from scleroderma. I am very interested in any procedures that can help this problem, as it is affecting my quality of life quite a bit. I feel as though I can't do some of the things that I want because of this. It gets me down sometimes, and it isn't the sort of thing you can discuss with anyone, so it does become lonely.

It's great for me to have met someone else with a similar problem, and to hear that something can probably be done about it. Hope that the SNS goes well for you.

Take care,
Anne

#9 Robyn Sims

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Posted 30 July 2012 - 10:24 PM

Hi again Anne,
Yes, incontinence is a major problem for some people with scleroderma. This was bought out in the open by a wonderful lady in South Australia who wrote a great article. We address this problem at our seminars too, as once the subject to mentioned, there is a huge sigh of relief amongst the audience.

There are procedures which can help certain problems, but you need to mention this to your scleroderma specialist. My daughter recently went to a rectal specialist. She was so embarrassed and upset but he was wonderful and as he was an expert we were given very good advice.

If there is no immediate procedure which can help there are certainly many things you can do yourself. Our Scleroderma Clinical Nurse Specialist at St. Vincent's Hospital in Melbourne and Monash Medical Centre at Monash Medical Centre have lots of information. Also Scleroderma Australia have produced a brochure in conjunction with the Continence Foundation which sets out the different problems and what is available to help.

There were many members who never attended any of our outings, AGM, concerts etc. due to this problem, and it is wonderful to see them out and about now.

Kind regards

#10 judyt

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Posted 30 July 2012 - 11:28 PM

Hi Anne400,

It is interesting that as soon as you start to talk about the effects of our disease, we start to hear about people with the same problems and how they have coped.

There are several threads on the forum talking about incontinence from the sufferers point of view.

I am not able to give you a link (due to my complete inability to understand how these things work :wub: ) but no doubt Jo or Shelley will see my post and can guide you. It is really helpful to read of other people's experiences. The other thing I did was to 'google' Sacral Nerve Stimulation and I brought up plenty of technical data about SNS and I also found a list of all the practitioners in Australia who are using this procedure. There is absolutely no need to feel embarrassed, they and their staff take it all in their stride.

Don't hold back on asking for help, the sooner you do it the better the result is likely to be.

Good luck
Judyt

#11 Joelf

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Posted 31 July 2012 - 12:52 AM

Hi Anne,

As per Judy's post here are a couple of useful links on Incontinence:-

Bowel Dysfunction in Systemic Scleroderma, Faecal incontinence in patients with systemic sclerosis: is an impaired internal anal sphincter the only cause? and also a thread on Bowel Incontinence which should provide you with a little light reading!

Kind regards,

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#12 anne400

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Posted 02 August 2012 - 03:17 PM

Hi everyone,

I visited the colo-rectal surgeon yesterday, and he confirmed that the problems I have with bowel incontinence are caused by scleroderma. He didn't think that much could be done about it, that is sucessful. Basically it sounded like "go away, and learn to live with it". I also have haemorroids which he is going to treat with bands, which I will have done soon.

The doctor is a nice guy but very matter-of-fact. All this leaves me in a position that I'm very paranoid when I am not near a toilet. This disease really is awful, with all of its effects, and the effects on quality of life. While I was reading the other posts on this topic I realized there was people with much more to cope with than me.

I will try to ignore the problems and get on with life as much as possible. I have 2 grandchildren that are beautiful and are 3 and 5, and I am going to my grandson's 'Special persons day' in about a week. There are things like this which I enjoy, but get spoilt by the bowel problems through not being confident that nothing will happen that is embarrassing.

I still might get a second opinion about this problem, and whether there is anything that can be done that is sucessful, such as the SNS that Judyt mentioned. Thanks to Joelf and Amanda for the links they posted, they were very informative and I still haven't looked them all up, but will.

Take care,
Anne

#13 Robyn Sims

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Posted 02 August 2012 - 10:34 PM

Hi Anne,
Sorry to hear that the specialist felt there was nothing he could do to help. Please get in touch with the Continence Foundation. There are products they have which enable you to go out and feel confident. They may work for you.

I like your attitude. I have grandchildren around the same age as yours and feel so lucky. I guess we do need to see our glass as half full, as you seem to be doing.

Kindest regards,

#14 Amanda Thorpe

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Posted 05 August 2012 - 12:42 PM

Hello Ann

I am sorry it has taken me so long to reply to your post. You DO NOT have to just learn to live with your problem, there are things that can be done for bowel incontinence as per the links in the posts from me and Jo. The fact that your doctor doesn't think it's a problem doesn't mean it's not. Sure everyone has something to "live with" but that doesn't meant what you're living with is a walk in the park!

Please get your doctor to look into the possible treatments for you and take care.

PS I don't mean it can be cured but may get better, either way, better to try than do nothing.
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#15 anne400

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Posted 05 August 2012 - 02:38 PM

Hi Amanda and Robyn,

I will get on to the Continence foundation; that seems a really good idea. Also I will soon get another opinion from another surgeon, as I feel I am too young, (54), to be living with this problem as it is for the rest of my life. As I've said before it does interfere with my quality of life, in that I don't have the confidence when I go out.

Will let you know when I have some more news. Thank you to everyone who has posted and shared their stories.

Take care,
Anne

#16 judyt

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Posted 05 August 2012 - 04:37 PM

Hi Anne,
I was sure I had replied to you after your visit to the Colorectal man but I must have been dreaming or else didn't click on Post when I had finished. However, my suggestion to you is to definitely get another opinion. I had to do that when I was dismissed as being a hopeless case!!

If you google Sacral Nerve Stimulation and then look for Australian links I am sure you will find a list of Surgeons who are treating Incontinence in this way and you could possibly talk to one of them. I found the list and was contemplating a holiday in Brisbane when I happened upon a Doctor here in Auckland who is the local expert. My implant is still a work in progress but he is still hopeful of an improvement for me. In fact, I do think I am a little bit better and am much more confident about venturing out now.

One of the best bits of advice I got a few years ago was to take a stool softening preparation, that prevents me having uncontrollable diarrhoea. It is available here on prescription or over the counter. If you want any more information you could PM me.

Best of luck
Judyt

#17 Robyn Sims

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Posted 05 August 2012 - 08:32 PM

Thanks Judy for your suggestion. This is quite a common procedure these days. Yes, get a second opinion Anne.

Perservere as yes, you are young, and many years ahead of you.

Kind regards,