Getting a diagnosis and psoriasis changing over time
The experience of being told they had psoriasis (being diagnosed) was talked about by lots of the young people we interviewed. This section is about...
There are different types of psoriasis – including those which affect particular body parts. Some young people we talked to had been told by their doctor which type of psoriasis they have. Others, like Lola, hadn’t been told. A few people had several types of psoriasis at once. Some people, like Adam and Hannah, found their psoriasis changed from one type to another over time.
The types of psoriasis include:
People often talked about the severity of their psoriasis. This is usually based on how much of their body is affected (0-100% of coverage) – some people knew this as their ‘PASI’ (Psoriasis Area Severity Index) score. Hannah says hers was 70%-80% last year but is now down to 3% since having biological injections. Lots of people had fears about their psoriasis becoming worse in the future. Yet, it could also be frustrating to be told by doctors that certain treatments weren’t available to them currently because their psoriasis wasn’t considered ‘bad enough’.
Plaque psoriasis is the most common type of psoriasis and many of the people we talked to had it. The symptoms include red, dry and flaky skin in patches of different sizes of more than 1cm. Some people had fairly small plaques of psoriasis, others had big areas covered by psoriasis plaques. This type of psoriasis tends to be chronic (long lasting), for which certain triggers can cause more severe flare-ups. The size and location on the body of the psoriasis can affect which types of treatment are used.
Guttate psoriasis describes a particular pattern of teardrop shaped psoriasis patches less than 1cm in size. Some said it looked like a rash on their skin. People who have had guttate psoriasis are more likely to develop plaque psoriasis. Guttate psoriasis can be a reaction to a trigger, such as a throat infection, and some people found they had more episodes of guttate psoriasis if they got further sore throats. For Hannah and Jack, putting on steroid creams to guttate psoriasis could be time-consuming and frustrating because it means applying it to each little patch.
Adam had plaque psoriasis (including on the scalp) which cleared up after phototherapy but then came back as small guttate psoriasis patches. In his experience, ‘plaque psoriasis can be a lot more irritating and a lot more painful at points and flaky’ whereas guttate psoriasis looks ‘like chicken pox or something like that’. Adam read that guttate psoriasis can completely ‘go away’ in children – he was optimistic at first it might for him, but says he now doesn’t think it will.
Pustular psoriasis is a type in which pus-filled blisters form on the skin. None of the people we talk to specifically named ‘pustular psoriasis’ as the type they had, but Zara and Russell both spoke about developing blisters which are associated with it. Russell hasn’t had blisters with his psoriasis since his first flare-up, but Zara gets them on her feet sometimes.
The symptoms of scalp psoriasis could be especially embarrassing for people because skin flaking was visible in the hair and on clothes. This was often mistaken for severe dandruff. For some people, the scalp was the first and only place affected by their psoriasis – but most had developed psoriasis on other parts of the body too. Tar-based shampoos and special steroid ointments specifically for the scalp helped some people, but could have downsides such as being difficult to apply.
Psoriasis can affect the nails, causing them to develop little dents and/or discolour. Sometimes people thought this was a fungal infection at first.
In some severe cases, nails can become so weak and broken that they come out of the nail bed. The feet were the only place where Zara had psoriasis. She doesn’t remember much about it, but she lost her toenails when she was little and they haven’t grown back.
Genital psoriasis is when areas such as the vulva, penis or bottom are affected. Abbie had some psoriasis on her bottom, which she said ‘obviously that wasn’t the nicest’. She said it can be physically very uncomfortable and a major source of embarrassment. Lucy encourages anyone with psoriasis in ‘intimate areas’ to speak to their doctor for suitable treatment.
The experience of being told they had psoriasis (being diagnosed) was talked about by lots of the young people we interviewed. This section is about...
Psoriasis can affect skin anywhere on the body. Some people we talked to had psoriasis only in one area, such as the feet for Zara....