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Patient Stories

Margaret's Story | Josh's Story | Rhy's Story | Hannah's Story |  

 

Psoriasis is a serious skin condition that deserves more national and international attention. Around 450,000 Australians suffer from this condition, yet most people know little about the causes of psoriasis and treatment options available. 

 

This lack of understanding can result in people with psoriasis feeling embarrased by their condition, anxious and depressed. Psoriasis is also often regarded as a cosmetic condition, which means many sufferers do not seek the medical treatment their condition requires. 

 

We need to raise the profile of this common, painful and emotionally-distressing skin condition in order to gain better access to treatment options for all Australian psoriasis patients.

 

Below are a number of patient stories, which demonstrate just why the world needs to take psoriasis more seriously.

 

Margaret's Story

 

Margaret Colquhoun is like many 64 year old women.

 

She lives in the tiny country Victorian town of Rupanyup and loves visiting her family in Ballarat and Melbourne.

 

She has two sons, two granddaughters and is excitedly awaiting the arrival of her first grandson.

 

She is also a year from completing a Masters of Arts, which she enrolled in because she thought she needed a new hobby after retiring.

 

Although Margaret tries to maintain a very normal, active lifestyle, she has also had to endure more than 50 years of a painful, embarrassing, and physically and psychologically disabling condition - psoriasis.

 

This common, but widely-misunderstood condition has had a huge impact on Margaret's life and she thinks it's time more people understand what psoriasis sufferers have to go through, whilst attempting to live normal, happy lives.

 

When did you first learn that you had psoriasis and what were your symptoms?

 

I've had psoriasis since I was 11. My psoriasis has been mostly plaque psoriasis but I have also had scalp psoriasis, nail psoriasis and psoriatic arthritis. I have never been completely without psoriasis since I was 11 and I am now 64.

 

My symptoms can vary from mild to severe. I've had psoriasis so bad at various times throughout my life that I couldn't put a 20 cent piece on my skin without it touching some psoriasis. At the moment my psoriasis is down to only one or two per cent of my body, so it's incredibly quiet.

 

Have you ever experienced any unusual or unpleasant reactions towards your psoriasis?

 

When I was a teenager I visited a hairdresser and she didn't know what it was right through my scalp. She actually cut my hair wearing kitchen gloves. As you can imagine, I was very embarrassed about my condition but decided it was important that people receive education about psoriasis. I visited the hairdressing college in Ballarat, so that I could speak to the students about psoriasis. Quite frankly, having your hair cut by someone wearing kitchen gloves, who then deliverately throws out their hair dressing tools, deters you from ever wanting to get a haircut again. It's awful to be treated like that, which is why I decided I had to talk to the kids, so they could understand psoriasis. 

 

What message would you like to send out about the numerous myths surrounding psoriasis, such as the myth that it is a contagious condition?

 

It's certainly not contagious. It is also nothing to be ashamed of. I was so ashamed of my psoriasis for many years and my life would have been better if other people had understood my condition. People ought to know that it's just skin that peels off.

 

In what ways has psoriasis impacted upon your life?

 

I used to spend a lot of time up at Noosa when I was a teenager (this was before Noosa was popular). When I was at the beach, people used to look at my skin and it made me very self-conscious. I knew my psoriasis wasn't contagious but nobody else seemed to. It was terrible for my self-esteem. It's bad enough being an 11 year old without psoriasis. It was not a happy time of my life. Unfortunately, psoriasis is a condition that still doesn't receive the attention it deserves.

 

There are many different treatments for psoriasis available. What kind of treatments have you had?

 

I've gone through everything from acitretin ointments to moisturisers to coal tars. I've also had so many various types of steroid treatments I have lost count of them all. I've been through methotrexate and now I'm onto the biologic treatment injections.

 

Has any treatment been particularly successful?

 

I would say "Thank God for the biologic injections". They are the reason I am down to only one to two per cent of psoriasis coverage on my body. I signed up for a trial two years ago, which was when I first came across the injections and they have been absolutely brilliant. 

 

What has been the emotional impact of psoriasis?

 

The constant itching can be severely distressing. It's a physical condition that can lead to many emotional conditions. I was put on an acitretin treatment and it was absolutely horrendous. I was actually suicidal at the time because of the itchiness. At the time my body was about 30 per cent covered with psoriasis, which is not the worst it has been, but I just couldn't stop scratching. There is nothing like an itch that happens 24 hours a day. There is this idea that you should put your hands in gloves or socks to stop yourself from scratching but I would wake up every morning without them on my hands and I was a heck of a mess. 

 

Is there any particular myth of misconception about psoriasis that you would like to dispel? 

 

People say "it's just your skin", but it isn't. I'm glad people are slowly realising that psoriasis is not just a skin condition. It's also not just a psychological condition caused by your skin. Psoriasis affects so much of your health and people don't realise this. The likelihood of other health issues are so much greater in people with psoriasis. One that's just popped up with me is Dupuytren's Contracture, which affects the hands and causes them to curl over. Apparently it's so much more common in people with psoriasis.

 

I would also like to tell people that psoriasis is not a condition that's easy to manage. Everything becomes more difficult with psoriasis. You spend so much time looking after your skin. You can't just nick in for a quick shower because you have to re-moisturise everything with a good moisturiser. Psoriasis costs money and it costs a lot of time. 

 

What advice would you give to someone who had just been diagnosed with psoriasis?

 

Try very hard to get yourself a treatment that works. It seems every treatment will stop working eventually but just keep trying until you find something. You have to keep going and don't give up. 

 

 

Josh's Story

 

 

"I see changes in my skin within a few hours when I am really stressed out."

 

Josh was diagnosed with psoriasis when he was 25 and said he was caught off-guard by the aggressive condition. He has had plaque psoriasis for nearly 10 years now.

 

"It started as a little patch on my leg and, within a year, I was nearly 75 per cent covered," Josh said. "It came out of nowhere and I had no idea what it was."

 

As a young man, who is hunting for a job and is also about to become a father for the first time, Josh's life is quite stressful at the moment and his psoriasis is almost the worst it has ever been.

 

"Psoriasis does affect my life when I have a lot of other things going on," Josh said. "Stress is my biggest trigger, so at the moment my psoriais is pretty bad."

 

Josh said although he is very much used to the physical side of psoriasis and has learnt to cope with his skin condition, it can become overwhelming when he is trying to deal with many other stressful events.

 

"The physical part of psoriasis I am used to now but, when I have many other stressful things going on in life, I notice the emotional impact of my psoriasis," Josh said.

 

As you would expect from most young men, Josh was self-conscious about his condition and ashamed of his dry, red skin.

 

"I was very private about my psoriasis when I was first diagnosed and I tried to cover up pretty heavily," Josh said.

 

"If it was a 40 degree day, I would still be walking around in jeans and a hoodie if I wanted to go outside."

 

Josh said, although he tried to hide his skin for a long time, he had "made his peace with psoriasis" and hoped to educate more people about it. 

 

"I don't have a problem with people asking questions about psoriasis," Josh said. "For me, it's very important to try and educate people and help them to understand what psoriasis is."

 

Josh said he didn't think people meant to cause him harm by staring at his psoriasis but were ignorant about the condition.

 

"Often people mistake psoriasis for eczema or a rash. I get that quite a bit," Josh said. "It's not until I tell them what it actually is that I see their eyes widen as they begin to understand psoriasis."

 

Talking about psoriasis with his friends and family helped Josh to begin to cope with his condition.

 

"For years my closest friends didn't know that I had psoriasis," Josh said. "Eventually they started asking questions and I could see the looks on their faces when they learnt what it is I have and what it's like to live with psoriasis. I could see them realise what a big deal it is."

 

Josh said talking about psoriasis with someone was a very important part of coping with the emotional impact of the condition. 

 

He also urged people not to give up on finding a treatment option for their skin and to see a dermatologist as soon as possible.

 

"Don't let psoriasis run your life. It's all about making important lifestyle changes. What works for me may not work for someone else but it's important to keep trying many different options to treat your psoriasis," Josh said. "Please seek help straight away. If I meet someone who thinks they have psoriasis, I will say straight away 'get a referral from your GP to the Skin & Cancer Foundation Inc'. I'm really lucky to be treated by the best dermatologists in the world." 

 

 

Rhys'S STORY

 

"The day I don't have psoriasis is the day I do a nudie run down a major street in Melbourne."

 

Rhys Willcox made this bold statement to his family last year, without knowing just how soon that day would come.

 

Rhys, 26, was first diagnosed with psoriasis in 2008. The condition turned him from a sun-seeking teenager, with a love of water sports, to someone too embarrassed by his skin to join his friends and family, as they swam in the Murray River throughout summer.

  

After six years and thousands of dollars spent on failed treatments and visits to various doctors, Rhys's psoriasis finally cleared when he was introduced to biologic injections at the Skin & Cancer Foundation Inc.

 

"I started Stelara [a drug used as part of biologic treatment for psoriasis] at the Foundation on the 5th of December last year and by the 19th I was clear of psoriasis and committed to my nudie run," Rhys said.

 

"It was peak hour traffic in St Kilda at the time, but I thought "bugger it" and ran for about a kilometre."

 

Rhys explained that, if the police had pulled him up, he thinks they would have understood. However, he carried with him his phone - full of photos of his psoriasis - just in case he had to explain himself.

 

Although he is elated now at the condition of his skin, Rhys's life was completely altered by the psoriasis, which started at a time when most teenagers feel miserable about the smallest of blemishes. 

 

"Psoriasis changed my life dramatically," Rhys said.

 

"Water polo was my life as a kid, as was being out in the sun - skiing and swimming. When the psoriasis started, everyone else would be out in shorts and t-shirts but I would still be in jeans and a long-sleeve shirt, which meant I had to give up water sports."

 

Rhys said when he first noticed a tiny patch of dry skin on his head, his dad suggested he go and get some ringworm cream. That obviously didn't help and the psoriasis began to spread.

 

"Eventually I had psoriasis from head to toe," Rhys said.

 

"Apart from the skin on my face, my entire body was covered."

 

As is common with psoriasis, Rhys's psoriasis first appeared on the site of a previous skin injury.

 

"I had a major head injury when I was 16 and the point of impact was exactly the same spot where my psoriasis first appeared," Rhys said.

 

"I think all of the stitches I had in that area may have had something to do with it."

 

Rhys said surviving the accident, which caused his head injury, was one of the main reasons he was able to have such a positive outlook when dealing with his psoriasis.

 

"I've had worse things happen in my life than psoriasis and I'm just happy to be alive," Rhys said.

 

"But I understand how psoriasis can be detrimental to other people's lives. I can see how someone without such a strong head would become very depressed by their condition."

 

Rhys urged anyone with psoriasis not to give up on finding a treatment that works. 

 

"If easy and natural treatments (such as sunlight) don't work, you should immediately put the steps into action to get onto the biologic treatment," Rhys said 

 

"Hopefully your psoriasis is not so bad and the treatments or drugs subside your psoriasis but, if it all fails, then at least you have ticked all the boxes to start the biologic treatment, which has changed my life."

 

Rhys said he owed getting his life back on track to the Skin & Cancer Foundation Inc.

 

"I can't thank them enough for what they have done for me," he said.

 

"I could continue my treatment in Albury now and never have to go back to Melbourne to see Sue Anderson and Peter Foley, but I don't want to have to do that. The day I came in without any psoriasis, Sue even had a tear in her eye. They're just wonderful." 

 

 

Hannah'S STORY

Hannah McNamara (right) is clear of psoriasis after receiving treatment at the Skin & Cancer Foundation Inc 

 

When you were first diagnosed with psoriasis, what were your symptoms?

 

I was first diagnosed with psoriasis when I was 18. It came on ferociously. I had a really bad cold, which set off the psoriasis; however, at the time, I didn't know what it was. I knew that psoriasis did exist in my dad's side of the family, but it wasn't very common, so it took us a while to work it out.

 

My psoriasis doesn't take to most treatments very well. It's quite stubborn and, when it flares up, covers the majority of my body. Instead of just being small cirlces of psoriasis, it merges together and turns into huge areas on my body. My legs are usually the most affected area and they also take the longest time to clear.

 

Is there anything in particular that triggers your psoriasis?

 

I had psoriasis on and off until I was 23, and then it cleared up for a couple of years. But, in the last year or so, I have had other health issues, which seem to exacerbate it.

 

My psoriasis tends to flare up after I get a really bad cold, and obviously stress is also a big trigger and makes the psoriasis worse. It's one of those hard things where you get stressed about the psoriasis and you can't stop stressing about it, which just makes it worse.

 

What treatments have you used and have any been particularly useful?

 

I've used all of the cortisone creams, tar creams, UV treatments, all of the medications and now I'm finally on the injections [biologic treatment]. My psoriasis is basically gone now, and I've only had three injections. I can't believe how great they've been. Nothing has ever worked this quickly for me.

 

How were you introduced to this method of treatment? 

 

I moved to the Fitzroy area but my dermatologist was in Sunshine. It was really inconvenient having to travel over there for UV treatment, so I got a referral to the Foundation. The Foundation is fantastic and seems to take my psoriasis more seriously than other places I have been for treatment. Before I came to the Foundation, I didn't know that there was any option besides UV treatment and creams for psoriasis but the Foundation introduced me to many other options. The doctors there take things very seriously and try hard to improve your quality of life.

 

How has psoriasis impacted upon your life?

 

It makes very simple things very difficult. Things that most people don't think about, like choosing what to wear for the day, become incredibly difficult. In summer, when you have to cover your body - you don't have to but you don't want people staring at you - it's really uncomfortable.

 

Sport is basically impossible. I stopped doing any sport because I didn't want to have to wear anything that showed off my skin.

 

Psoriasis also makes relationships really difficult because you can become very self-conscious and you don't feel good about yourself. 

 

Have you ever been treated differently because of your skin?

 

When I first got psoriasis in high school a lot of the girls were like "Ew, is that contagious? I don't want to touch you", and if I wear a short-sleeve shirt occasionally people will ask if they're safe to be around me. Those people are just ignorant and you get over it, but it's not nice to be reminded about your condition. 

 

What advice would you give to someone who had just been diagnosed with psoriasis?

 

I would say to be as vigilent with your treatments as you can. It's easy to get lazy, because you can't be bothered slathering cream on yourself all the time or going in for UV treatment, but you have to be diligent about it. If you let it go, it's just going to get worse. Try not to let it get to you, because, at times you will feel really crappy about yourself, unattractive and gross. Your psoriasis will go away eventually. You just have to keep trying.

 

Brad's Story

 

When you were first diagnosed with psoriasis, what were your symptoms?

 

When I was in my early-20s, working as a chef, I first noticed a small patch on my forehead. Numerous doctors put it down to wearing the funny chef hats. It wasn't until I went to see Dr Eric Taft, at East Melbourne Dermatology, that I found out it was psoriasis. Until that point, I had never heard of psoriasis.

 

At first, Dr Taft put me on UV treatment, which I did for quite a while. Eventually he decided he wasn't happy with my skin constantly being exposed to the UV treatment, so he sent me to see Peter [Associate Professor Peter Foley]. Peter then put me onto more medical treatments.

 

What treatments have you used and have any been particularly useful?

 

The Foundation introduced me to Stelara [a drug used to treat psoriasis as part of the biologics treatment]. Stelara has been fantastic. If I could write an ad about it, I would. I've been on it for a couple of years now and it's been very effective. I don't have any psoriasis at the moment. None at all. 

 

Have you noticed that your psoriasis is triggered by anything in particular?

 

I'm one of those people who thinks they're never stressed but, obviously when I was cooking, I was. I could be more stressed in life now, because I've got two kids, a mortgage and a job, but since I've been on the Stelara, I haven't had any flare-ups or signs of psoriasis at all.

 

How has psoriasis impacted upon your life?

 

When I was first diagnosed, it wasn't an issue but, as it developed into nasty plaque psoriasis, I became more concerned about covering it. I had psoriasis really badly on my knees and elbows, so I wouldn't wear shorts or t-shirts. It was horribly flaky and skin used to drop off everywhere. I wouldn't say it was debilitating but I was very aware of it and conscious of covering it up. 

 

What are your thoughts on the common myth that psoriasis is contagious?

 

Nobody has ever treated me as though my psoriasis is contagious. Nobody has ever looked at my skin and reeled away in horror. I have had plenty of people look at it and say "That's nasty" but none of them were concerned about actually catching it. I would rather people just ask me questions about it. A lot of people think my psoriasis is eczema or burns. I'm forever hassling my doctors to give me more information on psoriasis, so I can educate people if they ask. I would rather people ask about my condition, so I can explain it, rather than stare and look away awkwardly - like the elephant in the room.

 

What message would you give to people who have just found out they have psoriasis?

 

I have met people with psoriasis and have recommended they do everything they can to get into biologics. About 12 months ago, a friend's daughter had quite bad psoriasis, so I told her to ask her doctor about Stelara. Her daughter has responded really well. I am forever extoling the virtues of Stelara and of the Skin & Cancer Foundation Inc, especially Professor Foley.

 

Can you tell me about your experience at the Foundation?

 

I first met Professor Foley in Malvern, when I was a patient there. When Professor Foley introduced me to Stelara, I had to go to the Foundation to get the treatment. The Foundation is always great and always professional. Everybody working there knows their job really well and is always friendly and efficient. I can't fault the Foundation. 

 

 

 

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