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Robyn Sims

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Everything posted by Robyn Sims

  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,
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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, Robyn
  21. That's good to hear Simone, thanks for letting us know. Kind regards
  22. Hi Jaggers, Oh what a terrible experience you had. Sounds like you could do with a second opinion there. Your scleroderma specialist needs to know all this of course. Sounds as though you are really in the wars. Many of our members have had really bad chest infections so far this year. It does take such a long time to clear them up too. I see that Jo has headed you in the right direction in regard to scleroderma and the brain. Please let us know how things progress for you. And yes, it is good that you are back online again. We do miss our computers when they expire!! Kind regards
  23. Hi Simone, Stay positive and I am sure you will receive a few more posts. Kind regards
  24. Hi Stillriding, Good to hear from you again, but not due to a low blood count though! As we hear over and over again scleroderma is definately different for all people and their response to drugs also varies widely. However, I am sure that you will hear from some of our friends as to their experiences. I do know that my daughter had a terrible chest infection for about three weeks and needed two separate doses of antibiotics. She didn't have her blood count checked though, and gradually improved. Lots of nasty coughs going around this time of the year. Will be interested to hear what our friends have to say. Kindest regards
  25. Hi Tarryn, So far so good then. Looks like GAVE is not the problem. Did you get onto a good scleroderma specialist yet? I hope there is some more information for you from the others regarding the pill camera assessment. Keep us posted on how things are going, Kindest regards
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