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Everything posted by louiserawlings01

  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 fingers and grip better, although her foot is still very bad with no padding on the sole of her foot. So of course I'm thinking those symptoms are systemic sclerosis or am I just being over cautious like a mum?
  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 just hope we can put this behind us. Prof Denton was able to suspect she had morphea from just listening to her story, she had not even been examined yet.
  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. Has anyone else been mis-diagnosed with this very complex illness? My daughter is very happy she does not have this ticking bomb over her head but at the same time she is also annoyed that she has had to look at her life very differently for the past two years. I am just so happy that my little girl does not have Systemic.
  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 Cheryl Grant
  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 feeling a little bit better now about our appointment to London; hopefully just another set of eyes on her condition and bit more advice on how she can help herself to have a better life.. I sometimes think our GPs and consultants are relying on us to google everything .... I agree, I do like our consultant but she did look a little miffed when we wanted to be referred.. Possible ego problem I hope not, as she is our consultant. I have had an endoscopy as I have had reflux problems all my life, I was only sedated and found it perfectly okay to deal with, the barium meal was much worse. She had a colonoscopy about 2 years ago as she was bleeding and she was in there with people who were choking on their endoscopy so she is freeked out by it. I have told her she can be put to sleep but because of her fear of needles even now she does not want that either, poor wee thing has a blood test every month that she manages but it's the drip in the back of the hand that totally throws her. I hve told her she can have gas but she is having none of it and does not believe me. I am so looking forward to London and hope they can just help her to carry on having as productive a life as she can have. Thanks Amanda I will let her know; she just does not want anything else wrong, but prevention is best...... Will she still see her Edinburgh consultant once she goes to London as well? London is so far away we won't be able to just pop down 3-4 times a year unless she goes with her boyfriend and uses it as a wee weekend away.
  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 not have anything different her. She said we will not see a specialist consultant just a registrar, She said that the Royal Free is really for sufferers who do not have a consultant who knows about sclero. She does not say she is a specialist in sclero but knows a lot about it, and still learning. I suspect my daughter is her only patient with systemic sclerosis as she appeared to have read up a bit more on it when we went to see her last week. Me thinks she has been doing some homework... It is a very complex disease and therefore not many that specialise entirely in its field, this I know. I think she is just making sure we are not going to London expecting too high an expectation and for them to say someone got it wrong and here is a tablet to cure. We are not that stupid! :emoticon-dont-know: She has a gastro appointment for Monday as she is having some reflux problems but once again it is a fight to get her there. She said that so what if it is there, what can they do? Why suffer a endoscopy to be told it is there when there is nothing they can do that they are not already doing. Arggggggggggg........ We were also told by our consultant that her fibrosis if that is how you spell it, is irreversable and extensive due to the fact that the diagnosis was too late, if they had caught it early when she was symptomatic back in the July - December 2010, the MMF and steroids would of had a better effect...... Unfortunately our general practitioner who I am sure has some type of asbergers who cannot look you in the eye and has no expression or emotion, just fobed us off for months with it's just a virus or bug or something... Okay sorry rant over, so angry that our general practitioner did not catch this earlier, then her sclero may not have developed into diffuse systemic and just been limited. Just waiting now on our appointment with London (hope its not during the olympics) and our light treatment appointment with Dundee.....
  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 the risk was far greater than to be just brushed over. As far as I am aware my daughter's consultant is a sclero specialist, she is Dr Grey at the Western General Edinburgh, her fellow consultant is Dr Dhillon but Cheryl felt that she was very abrupt, in other words didn't listen to her moaning :D . Dr Grey said that she has delt with several scleroderma cases but Cheryl is her youngest patient so far. We are still going to ask to be referred to the London clinic but as she has a sclero doctor I'm not sure they will entertain her. Will keep you posted
  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 on. She has also asked that we speak to her consultant about the London clinic. Thank you for all your continued help
  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 more knowledgable than previously.
  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 assumed she was pregnant as she is so bloated, she was totally devastated and burst into tears, I so wanted to rant at this woman but my daughter needed me. She is a hairdresser and finding it very difficult with her drastic change in appearance. Either I was not listening or we were not told exactly what the taking of steroids is for, I know the MMF is a suppressant which she needs to be on but not sure why she is on the steroids. Pity the dermatologist and the consultant don't talk perhaps we would not be in this position.
  16. Hi Amanda I cannot believe I am saying this but, I wish it was localised, the effects are on 80% of her body, more severe on her left side of her body, her consultant has said that she has diffuse systemic sclerosis and the medication is to try to prevent the disease from attacking her internal organs. I was sure I read that only if the disease has reached the internal organs can it then be called Systemic Sclerosis or am I mistaken. From what I have read so far, this disease has a different path for every patient and that no two people are the same, so as you can imagine I am so usure as to what is going now. Her dermatologist has refered her for UVA1 in Ninewells hospital Dundee, my daughter is hoping that this will make everything alright, very hard to tell a 19 year old that it could be a shot in the dark as it is all still very experimental.
  17. Hi everyone I am new to this forum and not sure how all this works... My daughter has SSc she was diagnosed in March of this year. She is on steroids 20mg being reduced slowly as we speak and MMF. My problem is is that she has been refered for light treatment for her skin which is very bad especially on her foot, ankle and hand, at Nine Wells hospital in Dundee but has been informed that the risks of skin cancer are higher when on meds. She has decided to come off the meds in January to accommodate the light treatment against her consultant's advice. As far as my daughter is concerned the tablets are not making her better and the effects of the drugs outweigh the effects of the condition. I am so worried on the long term effects this could have on her. I know she has not come to terms with her illness as she refuses to associate herself with any society or group. Any advice out there for me
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