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About louiserawlings01

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  1. My daughter was first diagnosed with systemic sclerosis 7 years ago. After two years had a re-diagnosis to morphea generalised scleroderma. She was on disability with a blue badge etc until this new PIP system came in. She has gone from full award to absolutely nothing. She has appealed and went to tribunal today, but nothing new. Anyone else had a problem proving an invisible illness or do you have a different forum for discussion? Thank you in advance.
  2. My daughter started to go to Nine wells hospital in Dundee just before holiday for UVA1 treatment for her skin. It has made a fantastic difference to the skin that is not beyond repair. Her skin has softened significantly.. She was going twice a week for 15 weeks and got a nice little tan as well.
  3. Thank you everyone. I am sleeping much better now than I have in the last two years. I just need to breathe and not question the first diagnosis. As she will only be checked once a year, I so hope that anything that this awful disease wants to throw is obvious so we can get it treated asap. She is still under her own consultant twice yearly. And to think her own consultant in Edinburgh tried to dissuade her from going, saying she would not learn anything different.
  4. Thank you Judy just so happy that its not systemic. However the sceptical me is still questioning a few things. I watched Amanda Thorpe's video of systemic showing how her symptoms started and that is how Cheryl's started with the swollen fingers hands and feet then her whole body became swollen. Then the skin thickening all down her left side then the claw like hand being created, all this happening within a few months leading up to her diagnosis. Since then she has exercised her hand and done a lot of needle point which has helped to straighten her hand out so that she can now move her fi
  5. Hi Shelley Thank you for those words, not looking in the rear view mirror is an excellent way to look at this experience. I have two daughters, Cheryl is my youngest with scleroderma and has always been naive and a little childish, this experience has made her grow up very quickly and made her a little more outspoken than she used to be. I will point this out to her that this has brought out in her something that was hidden away. This has also had an impact on my older daughter in that she has all this what I would call 'survivor guilt', think this impacted her a lot, so jus
  6. Good morning everyone. My daughter was diagnosed with Systemic Sclerosis 2 years ago at the age of 18, confirmed with a biopsy. We were distraught and felt like we had been handed a ticking bomb. Yesterday she visited Prof Denton at the London Free and was told that she had Localised Scleroderma with fascitis although unusual in that it only affects most of her left side, without having Raynaud's, she has not got systemic. I cried most of yesterday for her and had the best night sleep last night in 2 years. I am so over the moon for her, the whole family across the globe are ecstatic
  7. Hi guys, My daughters scleroderma is worse on her left foot and it would appear she has an infection in it..... Does anyone know how antibiotics work on someone who has systemic sclerosis? As it's Saturday there are no doctors available only the local A&E, but the affected area is roasting and pulsing; she is in quite a lot of pain. She wraps her foot and leg up every night in her dermalogical cream and bandages so I told her to leave it bare last night to see if it helps but it didn't.. any advice anyone... we have also tried antiseptic cream. Thank you Louise Rawlings for C
  8. Ah I see what you mean, my understanding was that my daughters scleroderma has progressed through to diffuse, not that that is what she had to start with, however I am positive that the skin involvement would not be as severe if caught earlier.... It's such a pity that its a lottery who you get when you make your appointment with your general practitioner.. My actual general practitioner is a skin specialist but since he misdiagnosed my mother 7 years ago and she died, I never went back to him, he may have realised that something more than a virus was going on....... Thanks, I'm feeli
  9. My daughter is now having the same problem getting in and out the bath, however, due to her scleroderma being on about 70% of her body she cannot have a bath, she must have a shower. If she has a bath her skin gets so sore she is unable to move at all. We have just asked social services to come and assess her for a walk in shower and to remove the bath, so I hope they understand that she is unable to bath, just shower, due to her skin involvement.
  10. Hi everyone, Update on my daughter. She has continued with her MMF and being slowly reduced from steroids, now down to 8mgs but the withdrawal symptoms are getting worse. We have requested to be referred to the Royal Free Clinic; our consultant has agreed to do this and has set the wheels in motion, but does not feel that the Royal Free will do anything any different from her. I explained that we are not looking for a miracle cure (although how nice would that be), just another set of expertise. Our consultant said that they all have the same information as it is all shared and they do
  11. Thank you Amanda she has opened up a little a told me about all the unexplained symptoms she has been having over the last few weeks, she didn't want me to worry (nagg) so she didn't tell me... we sat down and googled symptoms of steroid withrawal. She is getting quite a lot of the symptons as she is slowly being taken off the steroids. I have to say after reading the information on sclero and steroids I'm more than annoyed that we were not made aware of all the facts. While I fully understand that if you list everything that could go wrong you would run a mile from steroids, I feel that t
  12. Oh my, you must be reading my mind, as that is exactly what I did. Its my birthday today and the family bought me a laptop and was so excited the first thing I did after setting up was go on to my emails and there were all the responses. As I had a lovely little glass of rose with me my tongue was a little loose and when she asked what I was reading I told her, she then sat down and read everything. We have had a good chat and will speak with the consultant about getting off the steroids, staying on the MMF and having light treatment on the affected areas. Will let you know how we get o
  13. You are so right there, my daughter said to start with every time she went into hospital there was a steady flow of students all wanting to talk to her adn touch her as she was only 18 when first dignosed with scleroderma, up to that point most of them had never seen anyone with sclero let alone someone so young. very freezing cold hugs from scotland lol Louise
  14. Hi Amanda In my rush to reply to your comment I did not consult the information from the hospital, they started by saying she has a "connective tissue disorder" namely scleroderma, with a autoimmune disorder namely systemic sclerosis, they were also surprised that she does not suffer from Raynaud's phenomenon, although her nails can go blue/purple in the cold. She had a skin biopsy that concluded she has systemic scleroderma. With so many names running around I am unsure what it is that she is suffering from. We have an appointment on 19th of December and I want to go in there a little
  15. Hi lizzi Thank you for that, my heart sank when I read your story about your son as I am so in tune with you, I can still influence my daughter to an extent as she is still at home, I so dread the day she is out there on her own as I know she is not happy taking so many tablets. She is more upset about her appearance than what this disease is doing to her insides. She also has acne now and is very bloated. A friend has a baby shop and were visiting her for a little blether and a woman came in and tutted at my daughter, she is very young for her age she only looks about 15, and the woman
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