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Systemic sclerosis/Scleroderma

naila_007naila_007 Member Posts: 27 Connected
Hi,
Just wondering how Systemic sclerosis/Scleroderma affects any one else.
Its a rare autoimmune condition. It has affected my skin and joints.
regards,
Naila

Replies

  • lisathomas50lisathomas50 Member Posts: 3,843 Disability Gamechanger
    @naila_007 hi  is that a type of lupus I have lupus and have similar symptoms 

    I have joint pain and skin problems  but not severe skin problems 
  • naila_007naila_007 Member Posts: 27 Connected
    Yes it falls under the same umbrella. Its been a long journey but couldnt have managed without the meds. So at the moment am in the vulnerable category.
  • lisathomas50lisathomas50 Member Posts: 3,843 Disability Gamechanger
    How long have you had it  i was diagnosed when I was 26 but said I probably started with it when I was 18 after my first baby 

    Do you cope well with it or do you struggle alot lupus has different effects on people I went to pain management  for  pain because slot of medications affect my lupus and so does food

    Hope thst you gave an understanding dr that helps 
  • naila_007naila_007 Member Posts: 27 Connected
    It has been 4 years  now. At the beginning i struggled so much had physio, OT and various tests every week. Tried different meds and last resort was to go on immune suppressants. With SS there is no pattern it’s different for each person. I couldnt even pick up a 2 pint milk bottle or bend down. My skin were so stiff and swollen. But now i just have to remember i can do it but just
    different to everyone else. 🙂
    Everyday is a learning curve!
  • lisathomas50lisathomas50 Member Posts: 3,843 Disability Gamechanger
    @naila_007 same with me I have learnt to do things differently i also have the blood clotting side of lupus my skin used to becresly bad if I had gone into remission once I came out it was worse 

    I dont go into remmision  anymore I know it sounds mad but I can cope better now  
  • naila_007naila_007 Member Posts: 27 Connected
    @lisathomas50 just wondering if you have had the Covid Jab?
  • lisathomas50lisathomas50 Member Posts: 3,843 Disability Gamechanger
    @naila_007 hi my specialist  and my doctor advised me not to have it  have you had yours yet 
  • naila_007naila_007 Member Posts: 27 Connected
    Hi - i have been invited to have my jab and all booked in. I have emailed my  specialist nurse waiting to hear back.  I feel my GP may not know enough about the condition.  I am on immune suppressants and touch wood not in a flare up.  I have been reading the vacacine is not a live one.  My appointment is for the 24th Feb - i been doing a lot of reading too but still non the wiser :(
  • lisathomas50lisathomas50 Member Posts: 3,843 Disability Gamechanger
    @naila_007 my dr is good she got in touch with my specialist  they got in touch with the St Thomas  hospital in London and they said I couldn't have any of them  you may be ok let me know how you get on 
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