Well I attended the chat, via Google Hangout, with other scalp psoriasis sufferers and GP Dr Ellie Cannon, to talk about the condition and share our stories and what's worked for each of us so far, treatment-wise.
How psoriasis affects the emotions
We kicked off by sharing some stats from the surveys you filled in (thank you so much to those who took part). One of the major things that struck us is that psoriasis, although it's just a few scales on the surface of the skin, has a huge social and personal impact on those who suffer with it. Just over 88% of those surveyed said that having psoriasis had an effect on their emotional wellbeing. That's huge. Many of us chirped up and said that we'd had emotional problems because of it - for me, it affected me in my teenage years - those years that you start to find out who you are and grow confident - because I couldn't wear certain clothes, was afraid people would see the flakes or me itching, and couldn't dye my hair or wear make up like my friends were doing (I used to have it on my face as well).
Almost 52% of you had an issue of some kind when going to the hairdresser. I argued that perhaps those issues were more to do with our own feelings rather than anything the hairdresser says (we're looking in the mirror and closely watching them for when they find the patches) but it wouldn't be a bad thing if hairdressers had more training on being sensitive about the condition, considering that it isn't contagious and obviously affects people's emotions, too. There were stories of very good hairdressers who were helpful and took the psoriasis into account when talking about hair dyes and treatments and that was excellent.
Dr Ellie Cannon said that in one of the places where she works, there is a special psychiatric unit set up in the dermatology department. Brilliant stuff, considering that research shows that psoriasis sufferers are more likely to experience depression. More of that please.
|Dr Ellie Cannon talking at the Scalp Psoriasis Roundtable (there's me, on the right, listening intently...)|
We talked about treatments. How some of the treatments available aren't very cosmetically pleasing or convenient. There was talk of those dark, gloopy coal tar shampoos staining towels (and also very fair hair), not to mention the fact that you go out not smelling of Chanel No 5 but as if you've been laying tarmac all day. People had some success with light therapy treatments, systemic treatments (pills that suppress the immune system) and with some lotions. Dr Ellie was quick to emphasise the fact that there is no 'cure' for the condition but that these treatments can help to lessen the symptoms. She also said that systemic treatments (pills) aren't dished out all the time - they're seen as "a big deal" by dermatologists and might even have some other side effects too. So your doctor or dermatologist will help choose the treatment that's right for you.
I asked Dr Ellie about what she thought of my own experiences - how I'd manage to clear almost all my psoriasis spots after some lifestyle changes. She agreed that yoga and mindfulness would help a lot, but when I told her I found that sugar was a potential trigger she said that was probably very personal for me and that there were "so many different factors at play." That's a fair comment, as we know the triggers (injury/trauma, stress, alcohol, etc) are different for everyone. She also made the point that maybe on those days when I'm stressed, I feel like eating more sugar anyway. But the psoriasis probably comes from the stress, for example. It's possible. But yep - there are so many factors at play, as she says, which is why lots of things work for different people.
Going to a doctor
Just over 68% of you said you'd get your information about psoriasis from a doctor. That's brilliant. But then just over 72% said they'd get information from websites. Just over 61% sought information on chat forums. That means that there are more people getting information from websites than going to their doctor. If you suspect you have psoriasis, definitely pop along to the doctor to get a diagnosis. We talked about our experiences and I was asked if I'd ever mentioned to a doctor that I found information about psoriasis online. I did - and I explained that the doctor didn't want to know about it. "I must apologise for my colleague's eye-rolling," Ellie said, with a smile. She went on to explain that while some websites, in particular the Psoriasis Association, are good places to find information - some aren't and promise overnight cures with expensive remedies, and these are the ones doctors would rather you steer clear of. So please do talk to your doctor before buying any expensive wonder pills you find online.
Misconceptions about psoriasis
It's not contagious, you won't catch it - it also isn't caused by being dirty. In fact, Dr Ellie said that psoriasis is a "whole body condition." It's an autoimmune disease, so what's happening is likely going on inside your body. It just shows itself on the surface, on the skin. It can get worse if you drink lots of alcohol and it often gets better with sunlight. Many of us are walking around so terrified that you'll see the white flakes in our hair and think bad things about us (or avoid us completely), but there's no need for that. There was a definite feeling that there are a lot of misconceptions about psoriasis in society - and recognising the emotional side was even a surprise for me - that depression could also be linked to how we manage the condition.
There will be more posts soon about psoriasis as I got so much from this roundtable and want to help spread the word. If you know someone with psoriasis, then why not share this post with them?
Thank you everyone again for filling out the survey.
I was compensated for my time in taking part in the roundtable, which was hosted byTots100 and Ruder Finn.