Johannesburg - From living a normal life, interacting with other people without even thinking about it, suddenly everything changes. People start keeping their distance from you. They won’t shake hands with you and look at you with revulsion. Some even question your hygiene or suggest that you have HIV and Aids.
This is the experience of sufferers of psoriasis – an inflammatory skin disease that causes sufferers to break out in thick patches of red sores covered with flaky silver-white scales. It sounds like some ghastly sci-fi plague, but it is more common than we realise.
About 125 million people or two percent of the world’s population are affected by psoriasis – a disease that occurs equally in males and females, predominantly in the age group of between 20 and 50 years. Fortunately, despite its unsightly appearance, it is not contagious.
“Sometimes I feel like crying the whole day,” says Vuyelwa Naye, 27, of Khayelitsha who developed the condition in March last year.
“Especially when I’m stressed I get the silver-reddish rash that is psoriasis all over my body. The only good thing is it’s not on my face.
“It’s very itchy and it’s embarrassing. I’m young and single, which makes it really difficult – I don’t want to expose myself to anyone, and people think they’ll catch it from me, even though they cannot. I really wish there was a cure for it.”
When Naye broke out in the psoriasis rash, she did not know what it was and was afraid she would infect her 6-year-old daughter.
She rushed to the hospital, where she was referred to a dermatologist who immediately diagnosed it as psoriasis.
“The dermatologist explained that anyone can get it, that it can also be genetic and that it can be brought on by stress. I think stress was the cause of mine because I had really difficult personal problems at the time that I got it.”
The dermatologist prescribed two creams and a shampoo, which Naye says are improving her psoriasis. “It’s taking time, but my skin is definitely better than before.”
She strongly urges anyone who develops a rash that fits the description to go straight to the hospital or a dermatologist.
Psoriasis comes in levels of severity. Sometimes it’s no more than a small nasty rash on your ankle. Sometimes, as in Naye’s case, it breaks out all over your body.
Sister Judy Wallace, chairwoman of the South African Psoriasis Association, stresses that by far the worst component of the disease is the psychological and emotional impact on patients. “People who don’t know any better see someone with psoriasis and assume that it’s a symptom of HIV, or even leprosy.
“There is a huge stigma attached, and people are scared that it’s contagious. As a result, many who suffer from this disease endure the added pain of discrimination in their communities
“Many patients suffer in silence. They feel they can’t do normal things. They cover up their bodies at all times and want to hide away.”
Celebrities aren’t spared the difficulties of living with the disease. Among those who have it are TV celebrity Kim Kardashian, singers Britney Spears and LeAnn Rimes, and Cara Delevingne, who has considered giving up modelling because of her psoriasis.
Tersia Lupton, 52, of Ferndale in Joburg, inherited psoriasis from her mother and developed the condition when she was just 14.
“Kids used to tease me, call me ‘scab’. They would stare at me and move away. If they were brave enough to ask what it was, I sometimes told them it was leprosy. And then they definitely kept their distance.”
In search of a cure, she even took a trip to the Dead Sea in Israel for the costly “Dead Sea salt therapy”.
You lie in the sea for eight hours at a time because the high salt and mineral content is supposed to clear up the sores. It worked for Tersia, but only for a while, and the psoriasis returned soon after she came back to South Africa.
“The worst thing about it, apart from the physical discomfort, is that people stare at you or visibly recoil from you. It makes life quite difficult,” says Capetonian Alister Porthen, 51, who developed psoriasis at the age of 26.
Patients with psoriasis suffer from depression, may entertain suicidal thoughts and are often absent from work or antisocial.
“It’s heartbreaking, especially because there are treatment options that allow patients to manage the condition and live a normal life,” says Sister Judy.
“Over the past 30 years, a whole range of new treatments have become available that allow patients to engage in a completely normal life,” says Dr Mohamed Docrat, a dermatologist who specialises in the disease and runs a psoriasis treatment clinic in Cape Town.
“Thirty years ago we were not aware that psoriasis is an autoimmune disease. We thought psoriasis was skin deep, but today we know it is far more than skin deep. Not only does it have a genetic link, but we are now aware that it is most definitely an autoimmune disease which is aggravated by stress and anxiety, and which can be associated with diabetes, heart disease, high cholesterol, obesity, hypertension and arthritis.”
Docrat says that while there is no cure for psoriasis, new treatments come through all the time that definitely improve it and help to manage it.
In addition to the use of topical steroids and tar creams, the introduction of new Vitamin D formulations, including Dovobet for psoriasis on the body and Xamiol gel for psoriasis on the scalp, have greatly enhanced treatment options.
Shampoos containing cortisone such as Clobex have come on to the market. Tar creams like LPC also help, and are affordable and available over the counter at pharmacies.
The level of severity dictates the treatment. Creams and ointments can successfully treat mild psoriasis outbreaks. Ultraviolet light therapy is extremely helpful for the treatment of moderate to severe psoriasis. Oral medications and injections are available for more serious forms of psoriasis.
The introduction of biologic drugs has been a major advance, as they target the immunological cause of the psoriasis that leads to skin eruption. Biologic drugs are also very effective for the treatment of arthritis associated with psoriasis.
All these treatments have side effects, so Docrat says it’s important that people consult a dermatologist.
Docrat is a member of the Psoriasis Support Group, which offers excellent service for psoriasis sufferers, and refers any sufferers to dermatologists or clinics in their area.
Tersia says what has worked best for her are cortisone creams, making sure her whole body is well moisturised and getting a bit of sun – a few minutes a day, which Docrat agrees is beneficial.
Alister has used psoriasis creams, mostly with success, for 25 years. Some years he has been completely free of it, at other times the disease has covered 80 percent of his body, such is its unpredictable nature. He says stress definitely aggravates his condition, but what has been his saving grace is his positive attitude.
“Fortunately I am completely comfortable with the disease, and I’ve learnt to accept it and live with it.” These days, when he has an outbreak and people stare or flinch, he will approach them and ask whether they would like to know more about the disease.
Living a healthy lifestyle definitely helps contain the condition. But sufferers agree that sometimes they just want to curl up under the covers and check out for a while.
Most types of psoriasis go through cycles in which the condition flares up for a few weeks or months then subsides for a period of time.
Once you get it, you don’t know how often or severe it’s going to be. The first line of defence is to get help, start treatment and join the SA Psoriasis Association where you will get much-needed support.
Case Study: ‘It scars me but it doesn’t define me’
Nandini Parshotam, 32
“I got psoriasis at the age of 28, while finishing up my master’s degree in India. One morning I woke up and found my thighs were covered in pimples that didn’t look like pimples. I thought it was just the intense Indian summer. But when it started to spread and the itching drove me mad, I knew it was something more and went to a doctor.
Since I was due to return to South Africa two weeks later, the doctor told me to get to a dermatologist as soon as I landed and gave me creams to assist the symptoms until then.
By the time I arrived in South Africa, the spots had spread all over my body and were working their way up my neck.
Dr DK Naidoo confirmed that I had psoriasis. This news rocked my world both physically and emotionally, plus I was so confused by it as no one in my family had ever had it. But I had to pick myself up and deal with it.
Treatment started immediately. I was put on incredibly strong meds (Neotigason) and had to have UV light treatment every day, which slowly decreased as the psoriasis dried up.
I also had creams to apply on the psoriasis day and night. This was just a tip of the iceberg – there was also a lifestyle change. I had to change my creams, soap, make-up, clothes – but my greatest change had to be my mindset. I started exercising, doing yoga and Pilates, to bring down my stress levels.
By doing all of this religiously, my psoriasis slowly dried up and life became more normal again. It’s been four years and I do occasionally get a psoriasis spot or two, especially when I am stressed, but I try not to get down about it, which is hard.
This time around, though, I know what it is and what I have to do before it spreads or gets worse. I am very conscious of the scars it has left, but I have learnt along the way that psoriasis is only a small part of me. It certainly doesn’t define who I am.” - The Star
CONTACTS:
SA South African Psoriasis Association, www.psoriasis.org.za
Dr Mohamed Docrat, tel 021 423 3180 or e-mail [email protected]