Jessiere88

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About Jessiere88

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    Bronze Member
  1. Welcome rach9, I am a new member here too, however I have had scleroderma for 10yrs, since I was 15. I have systemic scleroderma and quite extensive sick involvement, not least of which on my chest, so I totally understand. Unfortunately, I personally haven't been able to find anything to help with the tight skin. I use a lot of moisturiser which helps to soften the skin a lot and lesson the pain of the skin pulling. I'd also like to direct you to a painting I did about how I feel with the tight skin of scleroderma, particularly on my chest, which is one of my worst areas. It is in my photos on here, under the name sclera girl. If nothing else I hope it connects with you and may help translate your tightness, pain and frustration into a visual. Good luck, and keep posting. There is a wealth of knowledge on here. Jess xx
  2. From the album My Artwork

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  7. From the album My Artwork

    This one was a purely therapeutic painting of how it feels to have scleroderma. That is a zip on her chest. I often wish I could unzip my tight skin, and release it like a pair of too tight jeans, but as you all know, we can't.
  8. From the album My Artwork

  9. From the album My Artwork

  10. From the album My Artwork

    This is drawing I did of my Granddad after he died. It is a special one.
  11. From the album My Artwork

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  13. From the album My Artwork

  14. Wow Amanda, that's fantastic. Mind you it's very early days as I literally had the idea less than a week ago, but hopefully by early next year I should have a group organised and I'm sure that page will help. I may also need to drop you a few/a dozen questions as I have no idea what I am doing. Thankfully Google knows everything! Talk soon, and take care, Jess xx
  15. Hi Jess91, My name is Jess too, and I also live in Australia, but over the other side, in Queensland. There are a few specialist over here. I have seen them all over time. I don't really know what services are available over in Western Australia, but would be happy to chat with you about any issues you have. I've had scleroderma for a relatively long time now, 10yrs, and I have learned a lot over the years through many experiences. I understand your frustration in needing to find a doctor. My family moved from a small town to a bigger city to be near specialists before I managed to get a diagnosis. Scleroderma specialists are few and far between, but when you find a good one they can in invaluable. So good luck in your search, but remember you will also gain a wealth of knowledge from here, where there are others who have been in exactly the same situation. Hope to talk to you soon. Jess xx