Thursday 29 October 2020

Learning to Live with Psoriasis

Photo by Anastasiia Ostapovych on Unsplash

{This is a collaborative post}

Psoriasis is a little-known and sometimes taboo disease to suffer with, and I think that until you or someone close to you has it, your understanding on the profound impact it can have on a person's life is severely limited. 

About three or four years ago my son started to develop some red patches on his upper back and on his face, slowly they got bigger and then the skin started to thicken and it would look like he had white scales on him. This, of course, prompted a visit to our GP, who thankfully was wonderful and prescribed some steroid cream. After a couple of months without progress, she referred my son to a dermatologist to get an expert opinion.

After a few months wait we saw the dermatologist and he recommended that JJ wash with an emollient, moisturise twice a day and use more potent steroids on his patches of psoriasis, by this point, it had also spread to his upper arms. He also had to stay on the lower potency steroids for his face and make sure he had adequate breaks so his skin did not thin too much in this delicate area.

A skin biopsy was taken to check what type of psoriasis it is that my son has and it was thought that as he had skin damage (such as his teenage acne) the body was responding with rapid cell growth and he was ending up with psoriasis plaques (patches). Sadly over the last couple of years, it has progressed quite a lot and he now has psoriasis covering most of his body. Thankfully he doesn't seem too worried by it, but I know that as a 17-year-old lad it will only be a matter of time before he will wish it wasn't there!

Here is what we have learnt so far in this journey of living with psoriasis -

Don't make any assumptions

When you read articles about psoriasis you may find that none of them relates to how it presents for you. Most talk of there being a trigger such as stress or trauma, about it affecting your elbows, knees, scalp or lower back first and that you'll have flare-ups and times without symptoms. None of these things has been true for my son in the last few years. So make sure you don't make any assumptions, instead get checked by your GP and if it is progressing or treatment is not working make sure you push for a dermatology referral, as they are the experts. 

Different things work for different people

After JJ had been using topical steroids for a couple of years, it became clear that they were no longer working for him and I was concerned with putting steroids on him constantly when there wasn't any great improvement. So we have stopped and are looking for alternative methods to manage his psoriasis. 

Very quickly it became apparent that many people are now turning to CBD for skincare. CBD is an acronym for cannabidiol; a natural derivative from the Cannabis plant. Unlike the psychoactive THC, CBD is extracted from the hemp plant, and isolated to over 99% purity. I have to admit that I was a little worried at first about using CBD but now I realise it is different from the illegal drug and that many respected doctors and renowned skincare providers are using it as part of their products.

CBD oils can have a very positive impact on so many health and skincare conditions, as it is recognised as having anti-ageing and anti-inflammatory properties, as well as being rich in Vitamins A, D and E. In the Psoriasis help Facebook forums that I have joined recently, loads of people are advocating the use of CBD for psoriasis and apparently, it is providing superb relief from the pain, tenderness and sore skin that can come from having this condition.

It has become very clear from talking to others with psoriasis that no one solution works for everyone. The skin cream that doesn't work for you might have a great impact on the next person and as my son has shown, the skin can become immune to the positive impacts of any one product, so it is good to try different things.

JJ's psoriasis in June this year

Talk to others in the same situation

I felt like my JJ was the only teenager suffering from such awful psoriasis before I sought out fellow suffers, and what I found was that his is actually quite mild compared to some. This, of course, doesn't make me or him feel any better, but it is always good to know you are not alone and people that have had it years longer than you can give some great advice. 

One such piece fo advice was to adjust his diet, so he is starting to systematically cut things out of his diet in the hope this may help him heal from within, as psoriasis is a disease of the immune system. His first action has been to cut out artificial sweeteners and then he will progress on to gluten and finally diary. These are extreme measures but when you are faced with an immune disease that is progressively getting worse, rather than better something needs to be done.

Be your own advocate

Lastly, you have to push for and ask for what you want. JJ's steroids were not working and we had been offered UV light therapy but this wasn't tenable due to where we live and it being delivered a few times a week at the hospital. We then started to look at oral treatments as a next step and this has led to the discovery that one of JJ's liver enzymes is elevated and his liver and spleen are enlarged too, so now that has to be investigated before he can have any more medical treatments. It is through me badgering the doctors and hospital that things are progressing well and we are getting the information we need.

So, I'd urge you to remember that you are worth it and if you are not getting the care you need, then make sure you ask for what you want, even if you think it might be ludicrous. I asked JJ's dermatologist is he could have biologic treatment, which I understand is immensely expensive but it will be considered within the NICE guidance if he has a diagnosis on his liver.

Lastly, and I can't emphasise this enough - moisturise, moisturise, moisturise. It will make you so much more comfortable and lessen the scales that you shed everywhere. Happy healing!

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