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About Jessiere88

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  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. Jessiere88

    My Artwork

    These are a collection of some of my artworks
  3. 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
  4. 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
  5. HI Amanda, I'm not sure if you can have the smaller inside of the mouth without the outside smaller mouth as I have both. While I was reading your post I just kept thinking YES! I know exactly what you mean. The inside of my mouth is definitely smaller. My tongue, like yours, takes up my whole mouth and sometimes I become super aware of it and try to manoeuvre it to be more comfortable but feel like it just can't fit. The outside of my mouth has gotten so small that when I got my wisdom teeth out I had to be given a general so they could cut the sides of my mouth to make it open more so they could get the teeth out. I looked a bit like the joker with stitches at the side of my mouth. Lol. It is an interesting question you pose, but one thing I have learned about scleroderma on my journey is that scleroderma does whatever it likes, and that it likes me to be new, different, interesting and baffling. It likes to keep us and our doctors on our toes. My mum sometimes says I swallowed a medical encyclopaedia and like to throw things out every now and then. She and my general practitioner always say nothing is simple with me, and it is so true. So I think it is totally possible for the inside to be small without the outside being small. Jess xx
  6. Hi Lindahannah, I am sorry you are experiencing these digital ulcers. When I was high school I used to get them a lot. While a nitrolingual spray on my wrist helped to open the capillaries in my fingers and heal the digital ulcers, I have also used other things to help with the pain in the meantime. A topical anaesthetic gel like lidnocaine (there are other types which I just can't think of the names right now) simply numbs the area. It comes in different strengths so you should be able to get some relief. It does need a script so I would recommend speaking to your doctor. Sometimes doctors need a little nudge to think outside the box a bit :) Good luck. I hope you can find some relief and get some sleep. Jess xx
  7. Thanks for sharing your stories with me. I know what you mean Amanda. I am always amazed at the many ways scleroderma can affect someone's body. I am looking forward to sharing experiences on here. I have also decided to start a face to face support group for chronically ill young people in my area, as there is nothing like that here. I am hoping to get the assistance of a former ICU liaison nurse I got to know well when I was in there and was made redundant just after I left. Talk soon Jess xx
  8. Hi everyone, Thank you so much for your welcome. A bit about me: I was diagnosed with Mixed Connective Tissue Disorder/ CREST (Rheumatologists still like to debate my actual diagnosis, as some believe I have too much skin involvement to be CREST while others say I have every symptom of CREST, so it's CREST) with Juvenile arthritis, Scleroderma and Polymyosiits when I was 15, 2 years after getting sick. I also have Raynaud's as a symptom. I have some internal involvement but so far my lungs and heart have remained untouched, which I am very grateful for. I do, however have restrictive lung disease caused by my skin tightening making my ribs cave in. Due to this I have had 45% lung function for about 5 years. Last October I got pneumonia and because of my lung restrictions found myself in ICU on a ventilator where I stayed for months. In the end I spent 6 months in hospital. Before I went into hospital I was studying teaching full time at Uni. I had a year left. The specialists in hospital told me I wouldn't make it out, which, thankfully I did but I now have a tracheotomy tube. I have oxygen at home, and have learned how to suction myself. I have started making hair clips, which I am selling and I am really enjoying that, but I would love to get back to study. I really wanted to work with disabled children, and I am starting to wonder if there is another way I could do that rather than finishing my degree as I don't think I would be up to that in the near future. So that's me.. looking forward to learning about you all. Jess xx
  9. Hi Cillam, I am also 25 and have had systemic scleroderma since I was 13. For a number of years now I've had calcifications, mostly on my knees where I have quite a lot. It has been a rather frustrating journey with them. I have seen specialists, surgeons and been hospitalized with infections because of them. Eventually I found a general practitioner who removes them for me each time they break through the skin, as our experience has been that they will not heal until they are removed. We try hard to not cut them out until they physically break the skin though because we are careful to not add too much scar tissue to my already very tight skin. The only time I have had much swelling is when an infection has gotten through one of the openings made by the calcifications breaking through. I know you have already been on antibiotics, but it may be that there is still a break in the skin which would be constantly open to infection. Finding a doctor that would remove the calcifications was a mission but he's been so worth the search. Perhaps finding a doctor that will remove yours may be helpful. Good Luck. Jess x
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