Patient Stories Archives - Skin Health Institute https://skinhealthinstitute.org.au/category/patient-stories/ Treatment | Education | Research Tue, 19 Sep 2023 00:41:00 +0000 en-AU hourly 1 https://wordpress.org/?v=6.4.1 https://skinhealthinstitute.org.au/wp-content/uploads/2023/02/cropped-shi-favicon-32x32.png Patient Stories Archives - Skin Health Institute https://skinhealthinstitute.org.au/category/patient-stories/ 32 32 Michael’s Story – Overcoming recurrent paronychia https://skinhealthinstitute.org.au/patient-stories/michaels-story-overcoming-recurrent-paronychia/ Tue, 19 Sep 2023 00:38:38 +0000 https://skinhealthinstitute.org.au/?p=23514 Michael Smith’s Story Overcoming recurrent paronychia “When I first went to the clinic, I really did feel that I was with people that knew what they were doing.”  Michael Smith’s journey from detection to diagnosis to surgery began in June 2021 when he noticed a small, tender lump on his toe. Initially, “it didn’t cause …

Michael’s Story – Overcoming recurrent paronychia Read More »

The post Michael’s Story – Overcoming recurrent paronychia appeared first on Skin Health Institute.

]]>

Michael Smith's Story

Overcoming recurrent paronychia

“When I first went to the clinic, I really did feel that I was with people that knew what they were doing.” 

Michael Smith’s journey from detection to diagnosis to surgery began in June 2021 when he noticed a small, tender lump on his toe. Initially, “it didn’t cause a lot of grief, but it was clear that something wasn’t right.” It was sore to touch, so Michael made an appointment with a GP, but unfortunately, his initial referral didn’t lead to the specialist care he needed at that time. The GP prescribed Michael antibiotics and sent him on his way.  

The antibiotics did help for a time, but then Michael experienced what could only be described as a “yucky” flare up in October 2021.   

Michael works in a public library, a position that requires him to spend a significant amount of time on his feet. He found himself impacted in his day-to-day as “it’s not all sitting at a computer or a desk, there’s an element of that, but probably about half our time is spent on the public floor,” he says. He was suffering some pain from the pressure applied to the toe and ended up needing to wear sandals for the next six months. He recalls, “that’s where it was a bit difficult because technically, you’re supposed to wear shoes at work not sandals.”  

 As the issues continued to build up over time, they began to impact not just the toe but his ability to walk. He was “sort of hobbling a bit and overcompensating on one side … because that continued for a while it did impact just getting around. Not in an overdramatic way, but because it did go on [for months and months], you’re overcompensating on the good leg [to ease the pressure on the toe]. 

 It then became obvious to Michael that his condition wasn’t improving with antibiotics. This led him back to the GP to seek a referral following a conversation with a colleague who suggested that a dermatologist might be the specialist he needed.  

Sadly, for Michael, this was just the beginning of not being able to find timely appointments with various health professionals. He thought his podiatrist might be able to shed some light, but he couldn’t get into see him. He also had to wait to see his local dermatologist. 

 Michael reflects that he “suffered a bit of a lack of continuity with care.” His dermatologist left the state but was able to refer him to the Skin Health Institute.  

Eventually, Michael’s toe became so infected that he presented at John Faulker Emergency Department, and they removed the toenail. Things seemed to improve from there, but then he “noticed some soreness at the top of the toe which was a bit like the original issue back in 2021.”  

 He attended the Institute in April 2023, where he had a consultation with A/Prof Anne Howard and Dr Marguerite Seith. He received a diagnosis of recurrent paronychia, a condition that arises when bacteria or fungi infiltrate the skin around the nails, leading to painful inflammation and swelling. 

 Given the history and its chronic nature, Anne and Marguerite made a decisive recommendation for a surgical procedure to narrow the toenail to prevent further recurrences. Michael underwent the procedure in June 2023 with Professor Johannes Kern, assisted by Dr Sara de Menezes. 

 Michael was very pleased after that consultation in April. A decision had been made and “they had a solution that looked like a permanent fix for the issue.” 

 Reflecting on his journey, Michael stressed the importance of seeking specialist advice and diligently following treatment recommendations, “you’ve just got to seek specialist advice. Don’t ignore it … you do need to do what you’re told in terms of treatment … even if you don’t end up with the result you hope for, you’ve just got to do exactly what you’re told by the experts. And sometimes it might not go totally as planned but that’s just the reality.” 

 Michael did express frustration regarding his prolonged healthcare journey and the challenges of obtaining timely specialist appointments. Yet, he recognises the crucial role healthcare experts played in his recovery, “when I rang up in March this year, and my referral had expired, this is where the positive story kicks in 110%, knowing the history, I was seen in a timely manner.” 

 Since undergoing the procedure, life has returned to normal for Michael. Sara commented to him, which came as a bit of a shock, “you’ve just got to treat the toe normally now”. The condition, having been chronic for 2 years, had caused Michael to live a certain way so things “just sort of revert back. Not having to bath it or faff around with it, you get that time back. But it’s a bit of a readjustment as you’re used to faffing around with it. “ 

 In Michael’s recent experience, all the staff were fantastic, “from the admin people, when I first rang up my referral had expired, they explained that and they did make a timely appointment, and then when I came in, the nursing staff were all very good too. The nurse who was on duty the day of the procedure was fantastic. A lot of that bedside manner is important as well. I know a lot of the doctors have the knowledge but it’s something that they do every day, or versions of everyday. For patients and people, it’s not our everyday experience and that bedside manner is very important. I work in a public library, so I get that, people don’t like being treated like a number.” 

 Michael was very complimentary of his experience post-procedure, “After the procedure, I was given a number to ring if need be. I didn’t, but I felt very supported … I felt I didn’t need to ask a lot of questions because they were pre-empted by the staff. Whether it was Sara or Johannes or the admin staff. You don’t go away thinking I should have asked this …verbally and written follow up was very good. She [Sara] had a lovely bedside manner you know just really lovely in the way she explained and communicated things so there’s a lot of trust. 

 That’s what it is about, being felt supported and taken care of.” 

 Michael’s road to recovery demonstrates how significant an early diagnosis can be and the pivotal role specialists like dermatologists can play in managing chronic conditions. His story also highlights the importance of direct referrals from GPs to experts so that patients may receive that early diagnosis and treatment from highly skilled individuals, “I always felt that as soon as I was at the clinic, I was in good, capable hands. I lost a bit of faith in the GP, but it was out of their scope.” 

The post Michael’s Story – Overcoming recurrent paronychia appeared first on Skin Health Institute.

]]>
John Rogers’ Story https://skinhealthinstitute.org.au/patient-stories/john-rogers-story/ Wed, 05 Apr 2023 04:46:34 +0000 https://skinhealthinstitute.org.au/?p=15280 SHI’s Skin Checks by Dermatologists program – John Rogers’ potentially lifesaving experience   Conscious of several moles on his legs, John was originally referred to the Skin Health Institute in 2020. Fortunately, those suspicious spots did not return any cause for concern at that time, however he was advised to undergo regular checks and make …

John Rogers’ Story Read More »

The post John Rogers’ Story appeared first on Skin Health Institute.

]]>

John Rogers’ Story

SHI’s Skin Checks by Dermatologists program – John Rogers’ potentially lifesaving experience

 

Conscious of several moles on his legs, John was originally referred to the Skin Health Institute in 2020. Fortunately, those suspicious spots did not return any cause for concern at that time, however he was advised to undergo regular checks and make note of any changes in his skin.

Late last year, the Skin Health Institute launched the pilot program, ‘Skin Checks by Dermatologists’, that allowed anyone to book in for a skin check without the need for a referral.

Luckily, John was on our patient email list and our announcement did not go unnoticed. He had observed some change in colour to the spots on the back of his hands and made an appointment.

During John’s appointment, our consultant identified a mole on his right flank that he was unaware of. It was recommended for removal, which was subsequently done at the Institute. The biopsy proved positive to a melanoma.

According to the Melanoma Institute Australia patients whose melanoma was detected by their doctor during a routine skin check were 32% less likely to die from melanoma compared to patients who identified their own melanoma.

John describes his skin as having “a lot of moles, which in most cases have been there for a long time.” After the removal of the melanoma, he went to the Alfred Hospital and had a wide incision performed around the initial scar and is now on a program of having checks every 6 months.

Talking about the sun protection John used prior to his melanoma, he reckons he could “write a book.” From the age of 8, he spent all leisure time surfing, swimming, or fishing. “Coconut oil became fashionable in my teens and later we also discovered zinc cream which we used on our nose primarily motivated by the hope that it would stop the peeling.”

In recent years, John’s hobbies have been swimming and golf. “I regularly use sunscreen and the type has been consistent with the evolution of sunscreens from the initial 10 and 15 SPF factors to now I just use 50.”

John is monitoring his skin more closely these days, and as previously stated, he now always uses sunscreen but given his two leisure time activities. “I wear a shirt (SPF approved) more often at the beach. I always apply sunscreen before a golf game and carry sunscreen with me on the golf course.”

John notes that due to his experience, he would come back to SHI for any future skin concerns.

He also thanked us profusely for letting him know about ‘Skin Checks by Dermatologists’. “I had no knowledge that I had an issue but made an appointment which ultimately led to early detection of a melanoma and the removal thereof. Potentially lifesaving.”

We are continuing to take Expressions of Interest for our skin check program. If you are interested, you can fill out our form here. Due to demand, we are looking to increase the number of clinics; however, this is subject to consultant availability.

The post John Rogers’ Story appeared first on Skin Health Institute.

]]>
Martin’s Story https://skinhealthinstitute.org.au/patient-stories/martins-story/ Fri, 09 Dec 2022 02:19:57 +0000 https://skinhealthinstitute.org.au/?p=3221 Martin King is a child of the 50s and grew up typically Australian. Hot summers spent down at the beach or fishing in a dinghy wearing next to nothing. At that time, there was no such thing as sun protection – sunblock hadn’t even been invented yet. “There were no hats, no sunglasses, no sunblock, …

Martin’s Story Read More »

The post Martin’s Story appeared first on Skin Health Institute.

]]>

Patient Stories

Martin King is a child of the 50s and grew up typically Australian. Hot summers spent down at the beach or fishing in a dinghy wearing next to nothing. At that time, there was no such thing as sun protection – sunblock hadn’t even been invented yet. “There were no hats, no sunglasses, no sunblock, no shirts, no shoes,” says Martin. In fact, the family doctor used to tell his mother to take all the kids clothes off, cover them in olive oil, and send them out in the sun, “we used to just baste and bake in the sun like rotisserie chickens,” he remembers.

With Martin’s English/Irish heritage, he was a “sitting duck” for skin cancer. He recalls that back in the day sunburn was just a part of life. His sisters used to argue about who was going to peel his skin off. One sister would do his front, the other his back and he would do his nose and ears. It was terrible, but it was life.

There was no such thing as after-sun care, it wasn’t even thought of, “I just remember, so many nights going to bed in such agony from such severe burns. My skin was burning and hurting. No wonder my skin now is compromised.” With the pain and severity with which Martin describes his burns, and they are in fact second degree burns, it is no wonder that he has sun damaged skin now in his early 70s.

Back then no one said ‘you must wear hats’. When Martin picks his grandchildren up from school, every child in the school has a hat on, “morning tea, lunchtime, after school, they’ll walk out with their hats, they’re just used to it.”

Martin found the Skin Health Institute through his dermatologist, after identifying a spot of concern on the back of his hand. He had been getting flaky skin in that spot and for two years it kept coming back. His dermatologist, Dr Webb had identified a Basal Cell Carcinoma (BCC) on his forehead, and she didn’t like the look of his hand either. She ended up treating it and taking it out. Martin notes that he “thought it was just damaged skin or sun damaged skin.” When it ended up being squamous skin cancer, he was glad the decision was made to remove it, “otherwise I’d still have it and it’d still be bugging me, and it’d get worse and worse and worse and who knows where it could have ended up.”

Of his experience at the Skin Health Institute, Martin felt a lot more comfortable than he thought he’d be. The reception staff were friendly and engaging, while the nurses were supportive before during and after. Martin notes that he’s not a good patient, “I don’t like pain. The thought of what they were doing to me was just awful. I didn’t like it at all, but they made my experience the best it could be.”

Martin underwent the Mohs procedure, which is a highly technical, micro-surgical technique used to treat skin cancers. Mohs surgery is the most exact and precise method of tumour removal, which offers the highest potential for complete removal of the cancer while sparing the surrounding healthy tissue. He says that during the procedure it was “pretty onerous” but now it’s great. The skin graft is repairing well as he previously had a massive hole in his hand where the cancer had been removed.

Overall, it was a positive experience as Martin is no longer ashamed of his hand. “I used to hide my hand or put my other hand over it just to hide it. I’m really pleased now I don’t have to do that anymore.”

Since undergoing surgery, Martin is regularly checking his own skin and is quick to make an appointment with a skin specialist if something seems unusual. His attitude is, all he can do is “get it early and get it sorted.”
Although he has encountered his first skin cancers now, his sun behaviour has been very sensible for the past 25-30 years. “The first thing I do when I wake up, I wash my face with water, then I put moisturiser on my face, then once that’s dried off a bit, I put sunblock on.”

He covers up all the time and wears long sleeves on walks, especially since the skin on his forearms is quite damaged and very sensitive to the sun. Martin also makes sure to put sunblock on the back of his hands, on the back of his neck and, importantly, his ears. Thinking back, he says, “God I never used to do my ears, I’d do my face and just leave my ears and then I had sun damage on an ear. I thought, I couldn’t bear having one ear or having an ear amputated so now I do my ears very religiously.”


“And I’ve stopped wearing baseball hats which I think are a mistake. They partially help you, but they don’t help your ears and the back of your neck and down the sides of your face. So, I wear broadbrimmed hats now.”

Martin’s skin specialist has also warned him of the dangers of eyelid cancer, so he wears sunglasses as much as possible too and he’s buying new sunscreen every couple of months as he uses it so regularly. “I just try to be very mindful. I wish that back in the day I could have done the same thing, but we didn’t have the education, there was none. But now we’ve got the education and still a lot of people don’t take any notice of it.”

Thinking of young people, Martin believes “they want to look good, and they’d rather put looking good ahead of their good health or their good skin health. They think they’re invincible, it won’t happen to me. They just don’t think about it.”

Years ago, Martin’s dermatologist said to him, “remember that a good tan is bad for your skin, it’s damaged skin. It might look good, but underneath it’s not. [Young people] think they look fantastic, but they don’t realise tanned skin is damaged skin.”
When Martin thinks about his skin cancer and the sun behaviour of everyday Australians, his attitude is, “do the right thing by your skin before it gets too late. Treat your skin like you’re a newborn baby and it’s precious because it is.”

We asked Martin if he would come back to the Skin Health Institute, and it was a resounding yes, “it would be my first port of call,” he says. “I could say I never want to see you again but that would be rude, I would say I hope to never see you again.”

09 December 2022

The post Martin’s Story appeared first on Skin Health Institute.

]]>
Andrea’s Story https://skinhealthinstitute.org.au/patient-stories/andreas-story/ Thu, 01 Sep 2022 03:04:20 +0000 https://skinhealthinstitute.org.au/?p=11290 Andrea first noticed a skin issue as she approached the end of her third pregnancy in 2015. Initially it was treated as acne and symptoms would vary from a little to a lot. Over the next few years, her skin condition worsened as doctors would treat her flare ups with antibiotics and send her to …

Andrea’s Story Read More »

The post Andrea’s Story appeared first on Skin Health Institute.

]]>

Patient Stories

Andrea first noticed a skin issue as she approached the end of her third pregnancy in 2015.

Initially it was treated as acne and symptoms would vary from a little to a lot.

Over the next few years, her skin condition worsened as doctors would treat her flare ups with antibiotics and send her to the hospital where she would undergo surgery and receive lab results, ultimately finding no indication of the problem.

As the situation continued to deteriorate, the toll on Andrea’s mental health grew, especially post-surgery when she was left with wounds from cutting and draining that left large holes in her skin.

Andrea would be attended at home by a nurse who would change her dressings and check her wounds, but she was placed on pain killers and unable to function normally.

In order to discover what exactly she was suffering from, Andrea decided to visit as many doctors as she could and luckily one doctor was able to diagnose her as having hidradenitis suppurativa.

That doctor started medically treating her differently than before, however her flare ups were still making her life difficult.

She was able to see Dr Clare Tait who assisted her with treatment and armed her with a strategy for managing flare-ups.

 The condition became somewhat manageable, and Andrea’s mental health was improving with the feeling that someone finally knew what was going on.

Andrea first heard about the Institute after hearing a radio advertisement. She then read up about associated doctors and professionals and made a connection between Dr Claire Tait and a dermatologist at the Institute and decided to respond to the advertisement.

Since finding the Institute, Andrea has been coming in fortnightly for the last 12 months. She has seen a marked improvement in her mental health and her quality of life has significantly increased.

She has noticed that the Clinical Trials team at SHI is skilled in the latest scientific developments and treats every patient’s condition according to their individual requirements.

Andrea says “all the doctors and nurses in Trials are amazing. They work great as a team to deliver exceptional patient care. They are contactable after hours and you never feel alone. Even during lockdowns, they were still there providing care and having information for me that related to Covid-19 and my condition.

I have never doubted the expertise of the team and even when my treating doctor isn’t available, they use another doctor who has worked in the position before. I have never trusted any medical professionals the way I trust the team I work with. The resources they make available to you are second to none in my experience and I hope others could hear of them and not have to live in pain and discomfort due to the rarity of this condition.”

Andrea wants other people suffering from hidradenitis suppurativa or any other condition to know that they don’t have to suffer in silence, there are people out there that can help. She says she understands how difficult it can be finding that help, but once you do there is hope. Her recommendation for others with hidradenitis suppurativa is to contact the Skin Health Institute to ensure they get the best treatment and support possible.

The post Andrea’s Story appeared first on Skin Health Institute.

]]>
Cathy’s Story https://skinhealthinstitute.org.au/patient-stories/cathys-story/ Tue, 09 Aug 2022 03:12:01 +0000 https://skinhealthinstitute.org.au/?p=3211 Cathy had been feeling unwell for some time with low energy, bruising for no reason and little appetite. In 2012 at the age of 59, Cathy was diagnosed with Acute Myeloid Leukaemia (AML), a rare form of blood cancer, which without treatment, would only give her a short time to live. The diagnosis began a …

Cathy’s Story Read More »

The post Cathy’s Story appeared first on Skin Health Institute.

]]>

Patient Stories

Cathy had been feeling unwell for some time with low energy, bruising for no reason and little appetite. In 2012 at the age of 59, Cathy was diagnosed with Acute Myeloid Leukaemia (AML), a rare form of blood cancer, which without treatment, would only give her a short time to live. The diagnosis began a journey that included over two hundred blood tests, two rounds of chemotherapy, one trip to ICU with sepsis when many of her organs began to fail, a week in an induced coma and an allogenic (donated) stem cell transplant which saved her life.

“I decided to call my cancer the little c rather than the Big C. I wasn’t giving it that much power over my life!”
The Alfred Hospital referred Cathy to the Skin Health Institute to assist in the management of skin conditions that are common with transplant patients and cancer treatments. Chemotherapy can lead to many skin problems such as dryness, rash or sensitivity to sunlight. A common and sometimes life-threatening complication of these transplants is called graft versus host disease (GVHD), an immune reaction whereby cells from the donor’s immune system recognise the patient’s body as foreign and attack it. It can lead to organ damage and skin disfigurement as well as rashes, changes in skin colour, itchiness and the thickening and tightening of the skin, causing restricted joint movement.

In the process of battling GVHD for eight years, Cathy was prescribed with prednisolone, a steroid that supresses the new immune system in order to reduce symptoms. “I ended up with steroid induced type 2 diabetes which resulted in dry skin that was thankfully resolved after a series of insulin injections.”

But in many ways, Cathy was also one of the lucky ones when it came to managing the symptoms of skin conditions associated with her AML treatments stating that, “I was fortunate to only have minor, manageable skin problems, but attending the Skin Health Institute gave me confidence that any concerns would be picked up and dealt with efficiently.”

Now a decade on, Cathy’s AML is ‘cured’ and has become the focus of her recently published book, Life Blood, which documents her “expedition with cancer,” capturing moments of heartbreak and humour, while acknowledging the remarkable work of the medical practitioners that supported her cancer journey.

Cathy Koning’s Life Blood is available to order here and more information about Cathy can be found on her website.
09 August 2022

 

The post Cathy’s Story appeared first on Skin Health Institute.

]]>
RON’S STORY https://skinhealthinstitute.org.au/patient-stories/rons-story/ Mon, 01 Aug 2022 03:27:57 +0000 https://skinhealthinstitute.org.au/?p=3227 Could you tell us about your experience with psoriasis? I was diagnosed as a young boy – aged between 8 to 10 years old – by a doctor who was looking after my mum who also had psoriasis. I started with treatment, including all the normal creams, lotions, dressings, but nothing worked out for me. …

RON’S STORY Read More »

The post RON’S STORY appeared first on Skin Health Institute.

]]>

Patient Stories

Could you tell us about your experience with psoriasis?
I was diagnosed as a young boy – aged between 8 to 10 years old – by a doctor who was looking after my mum who also had psoriasis. I started with treatment, including all the normal creams, lotions, dressings, but nothing worked out for me. My mother went through a lot of UV treatment, however, I did not go down that road because I saw the effects it had on her.
I had psoriasis on my kneecaps, elbows, behind the ears and a few other spots, so going through school was really difficult. Everyone thought I had leprosy. As I grew up, I was fine with it as I came to terms with having it and just tried to continue living my life as ‘normally’ as possible. Overall, I think dressing in summer gear and going out with friends were probably the worst things. When going out for dinner, I had to make sure to wear long shirts so as to not leave flakes on the dinner table.

How did you come to be a patient at the Skin Health Institute?
As my sister was diagnosed with psoriasis at a later age as well, she has been coming to the Institute for quite some time. She had it quite heavily on her face, and her results from the clinical trials were great. Before coming to the Institute, she also went through UV treatment, and – consequently – lost elasticity in her skin. Another reason for me to not consider this type of treatment.

Had you heard about the Institute before being a patient?
Not at all. I frankly never looked into it as I was going to live my life as it was. I lived with this skin disease for so long, so I thought I do not need anything. I thankfully moved into this area thanks to my sister. She has put me onto the clinic as she has been an existing patient there, and I decided to give it a try.

What was your experience at the Skin Health Institute like?
I had a very good experience. I went to see three to four doctors overall, and all of them were really good, extremely knowledgeable and welcoming when it comes to questions of any type about the clinical trials. They explain everything in great detail (i.e. about trial requirements, changes that occur, etc) and gave me answers in laymen terms.
I have always been – and still am – fully aware of everything they do thanks to their transparency throughout. This is why I am still going back to the Institute to continue my treatment when necessary.

How did the Skin Health Institute help you manage your skin condition?
My treatments comprised creams and injections. However, the injections were much better as they had a much bigger impact than the creams – they worked almost immediately with greater long-term effect. Especially the last 12 months have been terrific for my skin. The psoriasis came right down, and it is barely noticeable that I had the skin condition at all.

Have any aspects of your life been positively affected by the treatment of your psoriasis?
It just made me more comfortable around people. I don’t have to worry about scaling off at the table anymore. People always think I had a motorbike accident since not everyone knows what psoriasis is and they certainly turn their eyes a bit. But it is what it is, and it is definitely very good now.
________________________________________
Are you struggling with psoriasis? You may be eligible for one of our currently recruiting psoriasis trials.

 

The post RON’S STORY appeared first on Skin Health Institute.

]]>
SETH’S STORY https://skinhealthinstitute.org.au/patient-stories/seths-story/ Tue, 18 May 2021 01:02:00 +0000 https://skinhealthinstitute.org.au/?p=1894 Could you tell us about your experience with eczema? I can’t remember all the details very well, since I was only a couple of weeks old. However, this entire journey with my skin condition has been as much of a struggle for my parents as for myself. From only a few weeks of age, I …

SETH’S STORY Read More »

The post SETH’S STORY appeared first on Skin Health Institute.

]]>

Patient Stories

Could you tell us about your experience with eczema?

I can’t remember all the details very well, since I was only a couple of weeks old. However, this entire journey with my skin condition has been as much of a struggle for my parents as for myself. From only a few weeks of age, I basically had it from head to toe, with some areas being worse than others. Basically, there wasn’t anywhere where I was immune from it. Normal activities such as going for a swim or taking a bath were a struggle, as they agitated my skin immensely. Things like wet dressings, cortisone cream and moisturisers were a normal part of life from a very young age.

As I grew up things got a lot better, and my eczema was very manageable as a teenager. But then, in my early twenties, it flared up again to the point where I had to take serious medication, including steroids and immunosuppressive drugs usually reserved for people with liver transplants!

While these medications certainly helped me manage my eczema to a great extent, they came with their own negative side effects, so were very much the lesser of two evils for a long time.

How did you come to be involved in a clinical trial at the Skin Health Institute? 

I was aware that the Dupixent medication had been available overseas and that it would be on the way to Australia and soon also be an option for us. So, I held my breath that It wouldn’t be too far away. A bit over a year ago I saw an ad on Facebook from the Skin Health Institute stating that they were looking for potential candidates that would fit the purpose of the trial. I rang the number, spoke to the study investigator Charlie, and he quickly realised that I was the perfect candidate.

Had you heard about the Institute before being a trial participant?

Not specifically. The only reason I saw the trials ad was because I followed an eczema support group on Facebook that had shared the Institute’s post. And the reason I followed them was – and still is – because they were the ones that did a lot of campaigning to get Dupixent to Australia and on the PBS.

What was your experience at the Skin Health Institute like?

Just phenomenal. In my initial phone consultation with Charlie, he said I would tick all the boxes. However, one of the hurdles was that I would need to wean off all the medication I was on for at least a month before I could start with the trial. Although they were ideally after someone who could start the treatment immediately, Charlie was kind enough to hold a spot for me so I could still participate. The weaning process was a trip to hell and back for about a month but it was worth it in the long run. When onsite, Charlie and Charlotte were great: they were very thorough in explaining the process and organising everything I needed. Everything was just smooth and easy from there on. And the results were just what I hoped for and more – so it was a phenomenal experience.

How did the Skin Health Institute help you manage your skin condition?

Obviously allowing me the privilege of being included in the trial was the big one. Other than that, their great knowledge and overall ability of walking me through the entire process in great detail really contributed to my comfort. Being in this position where one has to enter a trial, you like as much information as possible. Both Charlie and Charlotte were honest and upfront with everything. They helped me temper my expectations as there was no guarantee the treatment would be a success (as much as I was praying it would). They continued contact with me throughout the course of the treatment to make sure I had everything I needed, and they were also amazingly receptive to any concerns or issues I raised at any time.

What aspects of your life been positively affected by the treatment of your skin condition?

Discontinuing the previous medication has been the most obvious and immediate positive affect. I very quickly lost a lot of weight that I had gained from being on the steroids, and noticed a rapid reduction in other side effects such as the increased appetite, mood swings, trouble sleeping, night sweats etc. This has led to a massive increase in my overall confidence and general wellbeing.

Furthermore, the ability of playing sports again – considering that I hadn’t played for a couple of years – is another milestone I ticked off. Sport is now an option again and I can hopefully continue it for many years to come. So, all in all, the treatment has definitely been a life-changing experience for me, and in many ways makes me feel like a brand-new person!


Are you struggling wiith eczema? You may be eligible for one of our currently recruiting eczema trials

The post SETH’S STORY appeared first on Skin Health Institute.

]]>
BROOKE’S STORY https://skinhealthinstitute.org.au/patient-stories/brookes-story/ Tue, 15 Dec 2020 23:59:00 +0000 https://skinhealthinstitute.org.au/?p=1887 I always thought I was pretty good with sunscreen and skin care – into my 30s in particular, I would wear SPF50+. In saying that, I still didn’t appreciate the importance of reapplying, or wearing a hat, or seeking shade during the day. I found out I had skin cancer in April this year – …

BROOKE’S STORY Read More »

The post BROOKE’S STORY appeared first on Skin Health Institute.

]]>

Patient Stories

I always thought I was pretty good with sunscreen and skin care – into my 30s in particular, I would wear SPF50+. In saying that, I still didn’t appreciate the importance of reapplying, or wearing a hat, or seeking shade during the day. I found out I had skin cancer in April this year – a basal cell carcinoma (BCC) on the side of my nose. The dermatologist I saw thought it was probably there for about 12 months. I had no idea that it was skin cancer or that it could be. If I ever thought it was anything to do with skin cancer, I would have got it checked sooner. My GP picked it up first and referred me to a dermatologist. When I booked into the dermatology clinic they said that I needed to see them straight away. Because of where the BCC was, they also explained that I would need cosmetic or reconstructive surgery. 

My dermatologist recommended the Skin Health Institute, explained how brilliant everyone was and that they were the right people to help. So I went back and had a conversation with my GP, and we went through it all. My GP knew how worried I was and so did some ringing around to find out more about the Institute and to reassure me that it was the right path to go down.

I was extremely stressed – and googling a lot, desperate to work out what they were going to do in the procedure, what it was going to look like and whether I would look the same. There wasn’t much information around for people my age. Catherine Bennett, she was brilliant. I had taken recent photos of my nose because I know it’s so important to document these things, and so I sent the photos to her. Catherine was incredible over the phone – knowledgeable and reassuring, she talked me through everything. 

Overall, my experience at the Skin Health Institute was superb – truly impressive in every way. We are so lucky to have such skilled, internationally recognised people at the Institute. Apart from the surgeons, who were amazing, the nursing staff were exceptional. They made the biggest difference – absolutely gold star, ten out of ten. I was incredibly stressed and anxious, but I cannot overstate how important and reassuring they were to me throughout the whole experience

The post BROOKE’S STORY appeared first on Skin Health Institute.

]]>
CHRIS’ STORY https://skinhealthinstitute.org.au/patient-stories/chris-story/ Wed, 25 Mar 2020 23:51:00 +0000 https://skinhealthinstitute.org.au/?p=1877 I grew up a fair-skinned child in Melbourne and spent much of my childhood summers in the sun, so I have a lot of spots. My wife Jenny had been keen for me to get a skin check but I always thought I was too young. In 2000, when I was 34, a family friend …

CHRIS’ STORY Read More »

The post CHRIS’ STORY appeared first on Skin Health Institute.

]]>

Patient Stories

I grew up a fair-skinned child in Melbourne and spent much of my childhood summers in the sun, so I have a lot of spots.

My wife Jenny had been keen for me to get a skin check but I always thought I was too young. In 2000, when I was 34, a family friend had a spot removed by the Skin Health Institute and that was enough for Jenny – she booked me into the Skin Health Institute. I did not know much about skin cancer, or the Skin Health Institute – I had heard of melanoma but didn’t realise there were different sorts of skin cancer.

On the day of my appointment, I assumed I was just going in for a skin check. I was assessed by both a dermatology registrar and then Professor Robin Marks. It was only years later that I realised how senior Professor Marks was in his field. I had a couple of spots of interest to him, so he told me that we’d get them biopsied. I was surprised to find out they could do the biopsies immediately. I came home that day with some stitches on my abdomen and some on my lower back where the spots had been removed.

A week later I was called back in to the Skin Health Institute for my results. I had a feeling that being called back in was not going to be great news. I was called into a room with Professor Marks, who told me that the biopsy had come back and it was a melanoma. It had been completely excised, but needed to be re-excised to achieve a ‘safe’ margin.

Over the next few years I received further checks, to ensure that the melanoma hadn’t spread. I was very pleased to be regularly seen by more than one set of eyes each time I came in. The Skin Health Institute, being a teaching facility, has meant that I’m seen by both a registrar and a consultant. All the registrars were interested in my story, always tried to offer techniques to improve self-diagnosis and also how to look after my skin. The consultants were always there to oversee and confirm and gave consistency across visits.

Since 2001 I have multiple biopsies, several in-situ melanoma removed and a basal cell carcinoma (BCC) removed. All of this has been done onsite at the Skin Health Institute, which has been fantastic – sort of a one stop shop for my skin.

The skill of the work performed at the Skin Health Institute amazes me. I still have no idea how the registrars and dermatologists are able to differentiate my good spots from bad spots because I have so many – this is often remarked upon by people who look at spots all day! The skill of the plastic surgeons also astounds me. I had a spot removed from just under my eye and I cannot even see the scar – it is amazing.

I feel that the Skin Health Institute provides me with the best care that I can get because everything is done in-house. The nurses, registrars, dermatologists and plastic surgeons all work as a team, so you are not repeating your story each time; they know who you are beforehand.

Over the years I realised how lucky I had been. If Professor Marks hadn’t picked up the melanoma and acted so quickly, my outcome would have been much graver. Quite literally, the Skin Health Institute saved my life.

The post CHRIS’ STORY appeared first on Skin Health Institute.

]]>
JODIE’S STORY https://skinhealthinstitute.org.au/patient-stories/jodies-story/ Mon, 12 Aug 2019 00:04:00 +0000 https://skinhealthinstitute.org.au/?p=1846 With a full-time job and twin five-year-old girls, Jodie Harper doesn’t have a lot of spare time to spend waiting around the doctor’s office for a skin check. Although she had a small mole removed from her neck ten years ago, Jodie never had any unusual-looking moles that she could see. So, like many Australians, …

JODIE’S STORY Read More »

The post JODIE’S STORY appeared first on Skin Health Institute.

]]>

Patient Stories

With a full-time job and twin five-year-old girls, Jodie Harper doesn’t have a lot of spare time to spend waiting around the doctor’s office for a skin check.

Although she had a small mole removed from her neck ten years ago, Jodie never had any unusual-looking moles that she could see. So, like many Australians, she didn’t think a visit to her GP for a skin check was urgent or necessary.

Her behaviour and understanding of skin health changed drastically when her daughter Olivia noticed a strange spot on her shoulder.

I was standing in the bathroom talking to Olivia about makeup, when she said to me 'Mummy, what's that? That's changed.' I asked what she meant and she said there was a white bit around one of my freckles that was never there before."

Rather than pushing it to the back of her mind, Jodie scheduled an appointment with her doctor.

“My GP said, ‘You don’t need to worry as there’s probably about a 5% chance of it being something sinister, but I’ll send you to a plastic surgeon to get it cut out and tested. Don’t worry if you can’t get in before Christmas,'” Jodie said.

“When I called the surgeon there was a three or four month waiting list but I put myself down for a cancellation and ended up going in on the 7th of December.”

The surgeon removed the spot and told Jodie he didn’t expect to speak to her again until her post-op appointment a week later.

“He called me within two days to say it was a stage one melanoma,” Jodie said.

A second operation was promptly scheduled to remove a wider area of skin around the mole and be certain Jodie was clear. She was told not to panic and that she was very lucky they had removed it early but she should make an appointment with a specialist dermatologist to discuss her skin health.

“When I went back to my surgeon he said ‘there’s this amazing dermatologist called Dr Rosemary Nixon, you should try and get in to see her'”.

“He was the second or third person who had said that to me, so I thought I must definitely see Rosemary.”

Like everyone else who hears Jodie’s story, Dr Nixon was surprised to find out how the melanoma had been discovered.

“She was amazed when I told her my five-year-old daughter found it. Rosemary thinks Liv’s going to be a dermatologist or maybe a policewoman, she is so observant.”

“It’s just phenomenal what this little person has done. I could have had the mole for two weeks or I could have had it for 20 years, I had no idea whatsoever. And good old Dr Google told me moles can change from something benign to something lethal in just six weeks, so that played around in my head a lot,” Jodie said.

“With two daughters, I can’t take any risks.”

Jodie said she wants other Australia families to take skin checks more seriously.

I think the message I would like to get across, after going through this experience, is about families looking after each other. I had no issue about getting my mole checked, or going through the process of getting it removed, if I knew about it in the first place.

“Families and friends have to watch each other and say something if they notice changes.”

Jodie also thinks we have got to treat our skin health as a priority, as we do with other health conditions.

“Women are so conscious about getting pap smears every two years – it’s drummed into us from our late teens – but skin health just isn’t considered in the same vein,” Jodie said.

“It’s solely up to us to take the initiative. We have to be more mindful and active in scheduling our skin checks.”

Jodie said she had seen a lack of regard for skin health time and time again when telling her story.

Every person I have told about this experience has said to me 'I've got this spot I've been meaning to get checked' Stop putting it off and procrastinating. It can't wait.

Jodie hopes Australians can learn from her story. Especially the people who, like her, don’t sunbake but also don’t take complete care of their skin.

“I’ve never been somebody to sunbake but I did get incidental sunburn all the time,” Jodie said.

“Now I don’t leave the house without sunscreen on my whole body.”

While Jodie settles back into work after a very busy couple of months, Olivia and her twin sister, Leni, start primary school, where Olivia is making sure everyone knows that she once saved her mum’s life.

“I heard Liv telling one of the teachers at childcare last week that she’s a lifesaver,” Jodie said.

The post JODIE’S STORY appeared first on Skin Health Institute.

]]>