Hey there, I haven’t done this sort of thing before but I’m worried about my mum. She was diagnosed with Sweet’s Syndrome a few years ago now and we don’t live in a hot country but the summer becomes a nightmare for her. She’s currently experiencing lumps on her hands but worse she is experiencing lumps on her scalp which is leading to hair loss. Has anyone else on here experienced hair loss and if so, have any tips? Also I just don’t know how best to support her, so any tips on that would also be appreciated. My heart goes out to all of you battling this every day!
Mum struggling with Sweet’s Syndrome - Sweet's Syndrome UK
Sweet's Syndrome UK
I'm sorry to hear that your mum is struggling so much with Sweet's syndrome (SS).
I don't know what medication your mum is taking, but if she keeps having flare-ups then this is something that needs to be reviewed: helpforsweetssyndromeuk.wor...
Hair loss is normally caused by medication or an underlying/another health condition rather than the SS itself. If the hair loss is being caused by the lesions, then ideally, the SS needs to be brought under control.
Some Sweeties have a problem with skin damage or irritation, and this can trigger the development of new lesions (pathergy). Just like your mum, I have a problem with scalp lesions, and find that brushing my hair too roughly can cause new lesions. Your mum will also need to be careful about hair care products that irritate the scalp. In my case, the antibiotic doxycycline (a special kind of antibiotic that reduces inflammation) helped a lot with scalp lesions, but it's an SS medication that doesn't work for everyone.
Overexposure to sunlight or UV light can sometimes trigger new lesions. Some Sweeties also find that in the warmer weather they are more likely to sweat, leading to skin irritation (see comments on pathergy).
Hope this helps,
Thank you so much for taking the time to respond to me, I really appreciate it. I think it keeps flaring up because we live in Ireland so mum doesn’t have to worry about it for most of the year (hers is triggered by the sun) so she isn’t on steroids all year round. As for the hair loss, I think it might just be down to the stress of it all, it’s happened 2 out of the 4 years since she’s been diagnosed. Hopefully once she gets the steroids properly in her system again it will help!