Systemic sclerosis/Scleroderma

naila_007
naila_007 Online Community Member Posts: 40 Contributor
edited October 2021 in Rare, invisible, and undiagnosed conditions
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

Comments

  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,874 Championing
    @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_007
    naila_007 Online Community Member Posts: 40 Contributor
    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.
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,874 Championing
    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_007
    naila_007 Online Community Member Posts: 40 Contributor
    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!
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,874 Championing
    @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_007
    naila_007 Online Community Member Posts: 40 Contributor
    @lisathomas50 just wondering if you have had the Covid Jab?
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,874 Championing
    @naila_007 hi my specialist  and my doctor advised me not to have it  have you had yours yet 
  • naila_007
    naila_007 Online Community Member Posts: 40 Contributor
    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 :(
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,874 Championing
    @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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