Undiagnosed and rare conditions
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Sweet's Syndrome

bevt2017bevt2017 Member Posts: 353 Pioneering
Hi everyone 
I finally have a diagnosis from my neurologist today. after a year of going through hell. He told me that i have "sweet's sydrome" an extremely rare, disease. I am only the 4th person on record to have this. There is no cure or treatments. This disease has caused me to be prouvondly deaf, I have tinnitus, and neurological problems due to nerve damage. I also have had really bad infections to my hands, fingers and legs. At the minute I'm in remission, but ive been told it can come back at anytime. I'm on 2 anti depressants, sleeping tablets, and pain meds. Is there anyone on here who has this disease? Or can maybe give me some advice?. 


  • Liam_AlumniLiam_Alumni Scope alumni Posts: 1,113 Pioneering
    Hi @Bevt2017,

    I found a page on the British Skin Foundation's website about Sweet's Syndrome which might be of interest to you. I hope this helps.
  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @LiamO_Dell
    I found out today from my skin specialist. That I do have "sweet's sydrone" and there is no one who has my condition. The sydrone was named after a doctor robert sweets in 1964.  I have also been diagnosed with "pyoderma gangrenosum" another horrible incurable skin disease. 
    All to do with the immune system. 
    So it looks like I'm on my own with this. 
    Thank you for your help.
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    You may well be unique with your conditions, but you are not on your own.
    Our community is here to listen when you want to talk, help in any way we can and support you all the time you want it, so you are not alone !

    Be all you can be, make  every day count. Namaste
  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @CockneyRebel
    Thank you for you reply. 
    Scope have been fantastic with other issues I have had.
    I was hoping I could talk to someone about my conditions? instead of reading case reports. 
    Thank you again 
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