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Robyn Sims

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About Robyn Sims

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    Silver Member

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  • Location
    Melbourne Australia
  1. Hi Shauna Unfortunately the Perth Seminar has passed. I am sorry that you did not know about it before! I see this is the first time you have posted. We do have representation in WA via Arthritis WA for information and brochures. There is a support group at Mandurah. You can get this information at www.sclerodermaaustralia.com.au We are keen to support you in any way we can. I hope we hear from you further.
  2. Hi to all our forum friends in Australia and New Zealand! :emoticons-line-dance: We have kicked off 2013 with Seminars in Sydney, Newcastle and Perth on March. These were very well attended with approximately 80 people at each Seminar. Melbourne and Wellington both have Seminars on the 4th of May, you can find out more about these events on our websites. Brisbane are holding a seminar on the 18th of May. We know that education about scleroderma is very important to empower our members to make informed decisions about their illness. Seminars are also a great way to get information from Allied Health Care professionals. We certainly are having a beautiful Autumn and appreciating the balmy weather. Best wishes to all, Robyn
  3. Hi Helen, No news is good news Glad to hear that everything is going well for you. Hope you get through the winter without any ulcers. Kind regards, Robyn
  4. Hello Sajjad, What a wonderful uplifting story you have. So pleased that you felt you could share it with us. It seems that you have had such great support from your family in this journey. I am pleased to hear that your skin seems to be softening and you have not needed to take methotrexate. Very good. I see you live in Brisbane. At the moment Scleroderma Queensland are preparing for a Seminar and this information will be on their website. You can also contact scleroderma Australia on www.sclerodermaaustralia.com.au for further information. They would be able to send to you information Booklets and other literature. You don't say how old you are, but as you are a student I think you would be quite young. I wonder if this skin problem is on one side of your body. Another term for your problem is morphea, and when one side of the body is affected is is called linear morphea. It can take a long time for a diagnosis to be made, this is not unusual. Until some tests come back positive it is a wait and see situation. I can understand your distress at the time. Thank you for posting here. It was a pleasure to read your story. Kind regards, Robyn
  5. Hi Georgie, I am pleased to hear that the ice pack is helping. Perhaps as the weather cools down over the next few months this will help also. Insofar as the nodules are concerned, it looks like and wait and see, which is the best policy. Kind regards, Robyn
  6. Hi Georgie, Seems that this is in the too hard basket for the time being. Thanks Shelley and Judyt for your reply. Hope this burning settles down soon, must be very distressing. Kindest regards, Robyn
  7. It's been far too long since we had a post here at our Scleroderma Australia forum. Try as I might to get people to use this wonderful forum I am not having a lot of success. Just a reminder to all our friends, especially those in the Southern parts of Australia, to keep those layers of clothes ready for the months ahead. Our weather changes so quickly. Get those gloves ready and remember how quickly a Raynaud's attack can rear it's ugly head. We havequite a busy few months ahead with seminars in Sydney and Perth this weekend, one in Melbourne on the Saturday the 4th of May and another in Brisbane later in May. Will keep you posted on the date for Brisbane. Cheers to all, Robyn
  8. Great! This is a wonderful source of information and I really appreciate the work of Shelley and all her good friends and volunteers. Kind regards
  9. Hello Kapetrie, So pleased you logged onto this Forum site for some extra help and advice. Amanda has given very good advice. Although all rheumatologists would or should know about scleroderma, unfortunately there are only a few in each State who are well versed in Scleroderma. There are scleroderma clinics in Victoria, NSW, WA, Tasmania and SA. If you contact the State organisation near you they should be able to give you guidance as to who would be good for you as a second opinion. I was fortunate enough to attend the 1st World Systemic Sclerosis Congress in Florence in 2010. A survey had been conducted by Scleroderma Canada and one of the questions asked to approximately 600 participants was "What would you consider the worst symptom of scleroderma for you?" And the answer was Fatigue. This was presented to a team of medico's and at this year's Congress there had been some research into this. At this stage the doctors feel that the combination of all the trauma the body undergoes with scleroderma, causes this fatigue. The research is ongoing. So yes, a terrible urge to rest, and then not feel refreshed, is certainly one of the most difficult problems with scleroderma. Hope we can help you with a rheumatologist for a second opinion. Remember, you are the one paying the doctor, so you are entitled to seek further opinions. Kind regards
  10. Hi let's call you Mydotcom! You are one lucky lady. You are very wise to find out more about your condition before you go travelling. Even though you have no problems at the moment, educating yourself is a very good move. If you were to contact www.sclerodermaaustralia.com.au they will send you a booklet and pamphlets which contains information about Limited and Diffuse scleroderma. The most common practice here in Australia is to see a rheumatologist for scleroderma. There are some very good rheumatolgoists in Brisbane who I am sure would keep a closer watch on you. Kind regards, Robyn Sims
  11. Hi Miocean, I thought you would have known about these. They are a snuggly fitting glove that has silver thread intertwined into the weave. I will be seeing one of people trialling these, we have two suppliers, and will let you know the outcome and where you can get them. Other States are using them and I have heard reference to them from the UK. Will let you know. Kind regards, Robyn
  12. Hi girls, My sentiments exactly. When our days get shorter and the leaves fall I do think of all our friends in the Northern Hemisphere who will be raking the benefits of the season's change. I have noticed with my friends from the scleroderma community here that not only does the body improve, especially Raynaud's etc., but also the mind. The spirits lift when you can go outdoors and enjoy what nature has to offer, and I am sure the exercise one can do in the Spring and Summer also helps the endorphins. We are so lucky we have such wonderful clothing. We are triallying silver lined gloves here in Victoria and so far the results have been excellent. No doubt you have had them for years. Kind regards to all, Robyn
  13. Hi to all those in all States of Australia, Today the sun is out, the blossoms are falling and the air has a distinct warmth. Hope you are all feeling the benefits. Wishing you all some improvement over the next few weeks. Kind regards to all, Robyn
  14. 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,
  15. 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,
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