My story

7 posts in this topic

Hello everyone,


I came across this forum from the Scleroderma Australia website, and am so glad there are other people I can talk to about Scleroderma!!


I am 26 years old, and was diagnosed with Scleroderma 2 years ago, after many many tests (I read most of the posts here and can relate to the frustration of seeing many doctors and doing X rays and blood tests and MRIs etc).


I have Raynauds and lately it affects me almost daily. I used to take Norsvasc (amlodipine) but it isn't really helping as much anymore, so I stopped it. Like many of you, I get extremely exhausted and restless quite easily and this winter, I find myself just wanting to be in bed all the time.


In the last two years I have done most of the tests I needed to to rule out anything that is affected by the disorder including holter monitor and ECGs for my heart, Chest X rays, and recently I did my Lung Function test and Endoscopy with a biopsy. These results haven't come out yet....


I also did a urine test and they found microscopic hematuria, and ultrasounds discovered a small stone? I went to see a Urologist, and he told me it may not be the stone causing the blood, because, I don't seem to have any pain symptoms. He says it may be related to my Scleroderma. I have further X rays and CAT scans to be done.


The disorder affected me severely when I was first diagnosed. It made me nervous and anxious, and I was later diagnosed with clinical depression. But it's taken a lot and I have seen myself through all of this, so I can safely say, I am in a much better place, although, some days are definitely much more difficult than others.


I am trying to understand more of this disorder, because currently, I don't feel there is anything affecting me apart from my Raynaud's and painful joints (I have pain in my knees, fingers, and shoulders) to date. But, I have read that further complications may not arise till further down the track. I am wondering if anyone knows how often do you need to have a checkup on your organs?


Also, I am wondering is there a lot of people in Australia, particularly Sydney that suffer from the disorder? It has been difficult to explain to my friends and family what I am suffering from, when they don't see any physical implications. But the stress of tests, and the costs of specialists has made it pretty tough on me.


Anyway, thank you so so much for reading!!


- Jess

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Hi Jess,


Welcome to these forums!


I'm sorry to hear that you've been diagnosed with Scleroderma; however, now you've found our forums and joined our community, you will find a wealth of help and knowledge from all our members.


It does sound as if you've had a barrage of tests for Scleroderma, which is excellent. Are you being dealt with by a Scleroderma expert? We do recommend that if possible our members consult one, as it does require a specialist to deal with the idiosyncrasis of this bizarre disease. You should have yearly check ups for heart, lung and other vital organs to monitor the progression of the disease, but as it affects everyone differently, it's impossible to say whether you will develop further problems due to Scleroderma, or whether it will settle down and stablise. I have lung involvement and was feeling very smug and cocky as I thought I had the disease satisfactorily sorted; only to find that when I decreased my medication, I had a little flare up, so needed to increase the medication again (serves me right for feeling so jolly complacent!! ;))


I've included links to Raynaud's and also to our page on Emotional Adjustment, which includes one of Amanda's super videos. It certainly is a difficult disease to explain to others, particularly as quite often there are no obvious outward signs.


Please do keep posting and keep us up to date with your progression of the disease.




Kind regards,

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Jess,

Welcome to the forums, sorry you have Scleroderma and thankfully you have been diagnosed early. You are fortunate to have come across practitioners who recognised what was going on. I was younger than you are now when my disease first started to show itself but nobody knew what it was. I am now 68 and have had ongoing stomach and bowel problems for many years. I was finally diagnosed in 2003 and since then with medication and appropriate therapies I am doing better than I was.


I would say, from my experience, it would be wise to be well aware of what can happen and to have regular checks to keep things under control. My major bowel problems started in my 40's and I didn't get serious oesophageal discomfort until a few years later. It is all very well for us to advise seeing a Scleroderma expert but I know that in NZ there are none and even in Australia there are not very many as far as I know.


However, you will surely get some replies from our other members in Oz and they are better informed than me about who is practising where. Support groups are few and far between in this part of the world but you might find one Sydney. I am pretty sure there are some more active people in Melbourne.


Good luck with finding some support and in the meantime you will find plenty of sympathetic ears and kind hearts here on the forums.


Best wishes


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Hello Jess


Have a look at the video about emotional adjustment in scleroderma because depression is actually a natural reaction to being diagnosed with a chronic condition.


Yearly tests, as outlined by Jo, should be carried out and it's a case of wait and see, I went 3 years before developing organ involvement I.e. heart involvement. Everyone is so different scleroderma varies wildly from person to person!


I am glad you're feeling better about things and that you've found us!


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Jess,


I am so pleased you saw this forum on our website. My name is Robyn and at the moment I am president of Scleroderma Victoria and Scleroderma Australia. Been working hard to let all our members across Australia, 1000 members, that this forum is here for all those with scleroderma, their family and friends. Seems it must be starting to work.


I see you have had expert advice from my colleagues at this site, and thank Jo, Amanda and Judy for giving their valued advice.


Yes, there are many, many people in New South Wales who have scleroderma. At the moment Scleroderma Australia is working hard to help NSW update their website to help people get to the right doctors and get the support from others.


We are very lucky here in Australia to have the Australian Scleroderma Interest Group, which is made up from doctors in each State who keep yearly records and data to help with research.


If you send me a Register of Interest to Scleroderma Australia I will make sure that I put you in touch with others in New South Wales.


As you have said, the prognosis for scleroderma is unknown. Many people are upset that the doctors won't tell them what will happen next, but they just don't know.


The reason I am involved with these associations and this Forum is that my daughter, like you, was finally diagnosed with scleroderma at 26, just like you. She is now 38 and doing reasonably well. However, we try not to compare ourselves with others, there will always those who are doing better and those who are doing well.


Having been sent by Scleroderma Australia to many Seminars, both here in Australia, and in Europe, I have noticed that the range of treatment has improved quite significantly. This is not a cure, but it sure helps with the quality of life.


So please Jess, get in touch through www.sclerodermaaustralia.com.au and we'll see what support group, or perhaps one other person, you can be in touch with.


Kindest regards,


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Hello everyone,


Thanks you for your replies and your kind words. Your understanding has made me feel a whole lot better! I am due to see my rhematologist next month, but unsure if that is a scleroderma expert?


Thank you!

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Hi Jess,


Yes, we all are very understanding on this Forum.


If you let me know through my private email who your rheumatologist is, I can check with others as to the best scleroderma specialists in your State. It is always a good idea to get a second opinion if you are not feeling really confident with your doctor. Looking after your health is the most important thing you can do for yourself Jess.


Kind regards

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