Doing research
Posted Fri 16 Jun 2017 16.17 by Metarie1985
Beauty standard ignorer, unapologetic P sufferer for 10 years, determined to stay positive!
Clive - I'm not really sure what you mean by improving the immune system or how we would feel by having a stronger immune system. I don't feel unhealthy, just unsightly! And although psoriasis is an autoimmune disorder, I've had specialists frame it to me as it actually being more like my immune system is over reacting, so it's working overtime, not not working, if you follow.
Either way, it should be obviously just by googling psoriasis which symptoms us sufferers would prefer not to deal with. You may have to do a bit more research before coming back to us to ask a more pointed question. There are many resources out there, you've found this website for a start. I'd also recommend looking up the Get Your Skin out campaign for some information on how younger women (primarily, but not exclusively) feel about their condition.
Maybe if you could put together a questionnaire online we would be able to help you. But long story short, a stronger immune system *MAY* result in my psoriasis clearing, which would mean I don't have to:
-cover up on hot days
-wear only light colours so flakes aren't visible
-stop shaving my legs etc because the razor cuts the plaques and makes my skin worse
-avoid piercings/tattoos in case they cause a flare up
-think twice about DIY in case an injury which causes a flare up
-avoid certain activities or sports because I can't bear the idea of being stared at in my bathing suit or shorts
-cover myself in greasy lotions which ruin my clothes and bed sheets
-be jealous of all the soft smooth beautiful bodies that are EVERYWHERE in summer
-feel like my skin is the reason I didn't get that job/that guy doesn't want me/my friends 6 year old daughter won't hold my hand/my hairdresser doesn't want to dye my hair.
-warn new partners of what my skin is like before we get intimate
-use medication which can actually ruin my skin permanently for a short fix
-worry about passing this goddamn condition onto my child/children and feel tremendous guilt when they have a flare up
-worry about all the associated but little spoken about health risks which could quite dramatically shorten my life
I feel a little prickly today I'm afraid (haha, literally, UVB has my skin on fire!) but it should be easy to ascertain what we would change. Same as you'd ask anyone who had any chronic condition - what would it mean to you not to have to worry about X? I just simply wouldn't have to worry about it! Think of all the things in your life that stress *you* out, and then imagine you had to deal with the above list, plus a myriad of other problems the users of this forum will have due to their own personal experience. It sucks, IT SUCKS!!
Posted Fri 16 Jun 2017 16.55 by clivech
This is enormously helpful, thanks. This really helps me understand the range of issues you're facing. I've done lots of research into the symptoms, and have seen the long list of them on various websites. My focus is really on what it would FEEL like to have fewer/less intense symptoms. What would that feel like? What words would you use to describe a lessening of the effects of psoriasis, which could result from your immune system acting more normally? What you have given me above helps hugely: you would be more relaxed, less worried, less embarrassed, less constrained, freer, more capable, have more options, be more yourself, more natural, more spontaneous, less anxious, less envious, less depressed, etc. This may all sound obvious, but it's precisely what I'm trying to grasp. So many, many thanks for taking the time.
Posted Mon 19 Jun 2017 10.50 by MM (edited Mon 19 Jun 2017 10.54 by MM)
With respect I am not sure that your company have got a full grasp of this and other auto immune diseases by your wording to be honest with you . The immune system is up in arms and in overdrive already, its just wired wrongly so that its not able to moderate itself and its response to perceived threats. In these cases the immune system does not need ";boosting" further , it needs moderating and balancing.
In all other respects my immune system keeps me very healthy. I have not been ill in 2 years and can avoid a cold/flu/bugs whilst others around me are dropping like flies.
Posted Mon 19 Jun 2017 12.26 by Mclaren5
Hi Tony. I feel totally the same over relationships. I don't feel I can even begin to think about meeting a lady until my psoriasis has ,at least, calmed down. It's flared up pretty badly over the last moth or so.
Posted Mon 19 Jun 2017 12.33 by ClearskinPls
Since 2001, tried uvb and creams
My view is to be careful with tampering with the immune system. However if drugs can cure psoriasis by calming down immunity protection its obviously a tough choice....one im especially going to weigh up when I see my specialist soon. I worry about side affects with internal medication...that reorganise the immunity system
Posted Mon 19 Jun 2017 12.37 by ClearskinPls
Since 2001, tried uvb and creams
Also as mentioned above by another member , I too have impeccable health
Posted Mon 19 Jun 2017 17.37 by clivech
Thanks, MM. Yes, I think we grasp fully how the immune system works in this case. Maybe "boost" is the wrong word: we're not aiming to make it generally more active, we're making it perform better. That way, the elements of your immune system that are influenced by your brain and subject to psychological effects will work to enhance its effectiveness.
Posted Wed 21 Jun 2017 14.06 by Sheila54
If I didn't have psoriasis my life , I think, would be so much better. I would be more confident, higher self-esteem, my well-being would improve greatly, I could do things that I don't feel I could do now, go swimming which I love, wear pretty dresses, generally feel much better in myself.
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