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The skin to stone exhibiton demonstrates the varying degrees of the silent disease that is Scleroderma. This disease is indiscrimate. It has no preferences. It does not get passed down. It can manifest at various times in a persons life. It is often misdiagnosed and it is frequently misunderstood. Let us see and hear from those that live with the disease. Let us be educated.
Exhibition
Katrina Brown
Age 36, Gloucestershire
Katrina suffers with Systemic scleroderma and Raynaud’s disease.
Katrina was first diagnosed in 2008 and being only her mid-twenties, she was very young to hear such devastating news.
The news was even more tragic because Katrina worked as an army medic and this cruel disease couldn’t have targeted a more active as a person.
She was fortunate that she was given a stem cell transplant as there were trials in the US and because of her military background the press picked up the story and this really help get awareness out there to the public.
Of course, this treatment was not cheap so Katrina had just weeks to fund the cost (£110,000) but she did it with absolute determination and off the US she went.
Thankfully she saw great results from her treatment and didn’t stop campaigning and raising awareness and stem cell treatment is now available in the UK.
Katrina says “I’m here thanks to the army of people who have fought so hard to save my life. Raising awareness for others is the least I can do”
Katrina suffers with Systemic scleroderma and Raynaud’s disease.
Katrina was first diagnosed in 2008 and being only her mid-twenties, she was very young to hear such devastating news.
The news was even more tragic because Katrina worked as an army medic and this cruel disease couldn’t have targeted a more active as a person.
She was fortunate that she was given a stem cell transplant as there were trials in the US and because of her military background the press picked up the story and this really help get awareness out there to the public.
Of course, this treatment was not cheap so Katrina had just weeks to fund the cost (£110,000) but she did it with absolute determination and off the US she went.
Thankfully she saw great results from her treatment and didn’t stop campaigning and raising awareness and stem cell treatment is now available in the UK.
Katrina says “I’m here thanks to the army of people who have fought so hard to save my life. Raising awareness for others is the least I can do”
Jane Potter
Age 49, Halifax Yorkshire
Jane suffers with Systemic scleroderma and Raynaud’s disease.
Jane was first diagnosed in 2011 after going to her local GP as she was struggling with playing football because her hands were blue after playing.
She’d suffered with cold hands for a while but hadn’t thought anything of it. When it got more severe, she decided to get it checked out. Jane was sent for tests and they came back as A and A positive.
Living with Scleroderma mean that Jane often feels very cold more and has to watch what she’s doing.
Since diagnosis she has had six treatments where they pump a steroid infusion into her body.
Living is Scleroderma means Jane has annual appointments with her consultant and regular check-ups of her heart and lungs.
Jane tries hard not to let it affect her and has a very positive outlook on life. “If you let it affect you, it can take over your life, luckily I have a partner and friends who are supportive and understanding.
Being chronically ill means Jane doesn’t take life very seriously now. “It just makes you want to take account of your life and make the most of every day”.
Jane suffers with Systemic scleroderma and Raynaud’s disease.
Jane was first diagnosed in 2011 after going to her local GP as she was struggling with playing football because her hands were blue after playing.
She’d suffered with cold hands for a while but hadn’t thought anything of it. When it got more severe, she decided to get it checked out. Jane was sent for tests and they came back as A and A positive.
Living with Scleroderma mean that Jane often feels very cold more and has to watch what she’s doing.
Since diagnosis she has had six treatments where they pump a steroid infusion into her body.
Living is Scleroderma means Jane has annual appointments with her consultant and regular check-ups of her heart and lungs.
Jane tries hard not to let it affect her and has a very positive outlook on life. “If you let it affect you, it can take over your life, luckily I have a partner and friends who are supportive and understanding.
Being chronically ill means Jane doesn’t take life very seriously now. “It just makes you want to take account of your life and make the most of every day”.
Isla Taylor
Age 11, Lichfield
Isla suffers with Systemic scleroderma and Raynaud’s disease and was first diagnosed in 2018. I
Isla was 11 years old when we met in London 2019.
When you meet Isla, you will immediately be blown away by her beautiful energy and smile. Her Mother Julie and all her family are with Isla every step of the way as they see not only the physical challenges of Isla’s diagnosis, but also the mental stresses.
Her first symptoms started in February 2016 with daily occurrences of Raynaud’s. Within weeks Isla also experienced pains in some of her joints and was unable to join in with friend at playtimes.
By the beginning of 2018 Isla was experiencing daily discomfort, tenderness, pain and swelling affecting her ankles, hands and now was more frequently having problems with her jaw.
Severe fatigue, joint pains including discomfort in her calves and thighs plus sudden weight gain causing Cushing syndrome. More changes took place around medication to manage the symptoms including in July 2018 a lung capacity and a swallow test. This was the final piece of the jigsaw and Isla was diagnosed with Systemic Sclerosis on 6 July 2018.
Isla’s family and friends are always looking at ways to raise funds for SRUK for more research to be done.
Isla suffers with Systemic scleroderma and Raynaud’s disease and was first diagnosed in 2018. I
Isla was 11 years old when we met in London 2019.
When you meet Isla, you will immediately be blown away by her beautiful energy and smile. Her Mother Julie and all her family are with Isla every step of the way as they see not only the physical challenges of Isla’s diagnosis, but also the mental stresses.
Her first symptoms started in February 2016 with daily occurrences of Raynaud’s. Within weeks Isla also experienced pains in some of her joints and was unable to join in with friend at playtimes.
By the beginning of 2018 Isla was experiencing daily discomfort, tenderness, pain and swelling affecting her ankles, hands and now was more frequently having problems with her jaw.
Severe fatigue, joint pains including discomfort in her calves and thighs plus sudden weight gain causing Cushing syndrome. More changes took place around medication to manage the symptoms including in July 2018 a lung capacity and a swallow test. This was the final piece of the jigsaw and Isla was diagnosed with Systemic Sclerosis on 6 July 2018.
Isla’s family and friends are always looking at ways to raise funds for SRUK for more research to be done.
Amanda Sheldon
Age 52, Northumberland
Amanda suffers with Systemic scleroderma and Raynaud’s disease.
When Amanda was first diagnosed, she realised her body was failing her and she had to go part-time in her busy role working in the hospitality industry.
Her family and friends have been such a great support for her and help her face all the challenges that have come her way.
One of the toughest side effects of this cruel disease has been dealing with the legions on her skin which are both painful and make her feel self-conscious.
In her words it feels like the disease is holding her back from fulling living her best life and she feels like she is turning into stone on the inside.
Another huge challenge is the knowledge that so little is known about Scleroderma and people just don’t know anything about it.
Amanda remains as positive as she can living with this long term auto-immune disease and reminds us “It could be worse, at least it’s not my children or grandchildren that are suffering from it”.
Amanda suffers with Systemic scleroderma and Raynaud’s disease.
When Amanda was first diagnosed, she realised her body was failing her and she had to go part-time in her busy role working in the hospitality industry.
Her family and friends have been such a great support for her and help her face all the challenges that have come her way.
One of the toughest side effects of this cruel disease has been dealing with the legions on her skin which are both painful and make her feel self-conscious.
In her words it feels like the disease is holding her back from fulling living her best life and she feels like she is turning into stone on the inside.
Another huge challenge is the knowledge that so little is known about Scleroderma and people just don’t know anything about it.
Amanda remains as positive as she can living with this long term auto-immune disease and reminds us “It could be worse, at least it’s not my children or grandchildren that are suffering from it”.
Georgina Pantano
Age 33, Milton Keynes
Georgina suffers with Systemic scleroderma and Raynaud’s disease and was first diagnosed in 2012 in Warsaw, Poland.
It has to be said that Georgina really is a breath of fresh air, she is so incredibly positive and her personality is infectious but it is clear she has suffered a lot for somebody so young.
“Due to not getting answers here in the U.K, I had to go to Poland to get diagnosed. I stayed with family in Poland and was diagnosed over a weekend visit. As things had progressed and the disease was spreading internally, it resulted in me staying in the country and starting treatment within a week of being in Poland”
Previously she had been developing symptoms over one year and a half but they were overlooked by her GP.
She had been back and forth to her GP with many symptoms – starting with Raynaud’s in her hands, then swollen fingers, sore and aching wrists, painful joints and hip pain. She also experienced excruciating pain when it was cold and could barely lift her legs to walk. Later came the breathing problems - shortness of breath. She also developed redness to the skin - it gave the look of sunburn and she would get asked a lot where she’d been on holiday.
“When I was first diagnosed I felt very overwhelmed, I couldn’t really process it to begin with. I was very much in denial and angry. I was adamant to fly back to the U.K. and get back to work and carry on as normal. My family had to intervene and almost force back to hospital in Poland where I started treatment and ended up staying for the following year”.
Georgina suffers with Systemic scleroderma and Raynaud’s disease and was first diagnosed in 2012 in Warsaw, Poland.
It has to be said that Georgina really is a breath of fresh air, she is so incredibly positive and her personality is infectious but it is clear she has suffered a lot for somebody so young.
“Due to not getting answers here in the U.K, I had to go to Poland to get diagnosed. I stayed with family in Poland and was diagnosed over a weekend visit. As things had progressed and the disease was spreading internally, it resulted in me staying in the country and starting treatment within a week of being in Poland”
Previously she had been developing symptoms over one year and a half but they were overlooked by her GP.
She had been back and forth to her GP with many symptoms – starting with Raynaud’s in her hands, then swollen fingers, sore and aching wrists, painful joints and hip pain. She also experienced excruciating pain when it was cold and could barely lift her legs to walk. Later came the breathing problems - shortness of breath. She also developed redness to the skin - it gave the look of sunburn and she would get asked a lot where she’d been on holiday.
“When I was first diagnosed I felt very overwhelmed, I couldn’t really process it to begin with. I was very much in denial and angry. I was adamant to fly back to the U.K. and get back to work and carry on as normal. My family had to intervene and almost force back to hospital in Poland where I started treatment and ended up staying for the following year”.
Kat Cook
Age 40, London
Kat suffers with Raynaud's Phenomenon and Limited Cutaneous Systemic Sclerosis (LCSS)
Kat was first diagnosed with Raynaud's at school age. Her mother took her to the doctor because she was being teased by kids about her fingers being blue all the time. She was then diagnosed with LCSS in 2010 after workmates kept hassling her to get it checked out.
Kat has never taken part in any medical trials, but she did attend a medical research interview where they wanted to find out if she would be interested to self-inject medication if it was to be approved and put out on the market.
Kat says her family have been a huge support me but mostly she gets support and advice from her fellow scleroderma warriors because only they can fully understand how it feels when others need to help but have no idea where to begin. She is never one to complain unless she is feeling terrible and struggling with something.
When discussing how it impacts her at works Kat says
“I think it is extremely important for people to know about scleroderma, especially employers! I am constantly faced with the challenge of trying to explain to my employers my need to go for numerous hospital appointments and treatments without feeling like I am taking the mickey. It's a condition that isn't always visible on the outside for sufferers, so people think you're fine and wonder what all the fuss is about. I think it's all about educating, sharing our experiences and challenges to hopefully help people better understand the condition”.
Living with scleroderma does mean that there are limitations with regards to physical exercise which is frustrating as she used to love heading to the gym 5 days a week, now Kat manages two (virtual) classes a week. She struggles to walk long distances due to joint pain and getting short of breath.
Kat suffers with Raynaud's Phenomenon and Limited Cutaneous Systemic Sclerosis (LCSS)
Kat was first diagnosed with Raynaud's at school age. Her mother took her to the doctor because she was being teased by kids about her fingers being blue all the time. She was then diagnosed with LCSS in 2010 after workmates kept hassling her to get it checked out.
Kat has never taken part in any medical trials, but she did attend a medical research interview where they wanted to find out if she would be interested to self-inject medication if it was to be approved and put out on the market.
Kat says her family have been a huge support me but mostly she gets support and advice from her fellow scleroderma warriors because only they can fully understand how it feels when others need to help but have no idea where to begin. She is never one to complain unless she is feeling terrible and struggling with something.
When discussing how it impacts her at works Kat says
“I think it is extremely important for people to know about scleroderma, especially employers! I am constantly faced with the challenge of trying to explain to my employers my need to go for numerous hospital appointments and treatments without feeling like I am taking the mickey. It's a condition that isn't always visible on the outside for sufferers, so people think you're fine and wonder what all the fuss is about. I think it's all about educating, sharing our experiences and challenges to hopefully help people better understand the condition”.
Living with scleroderma does mean that there are limitations with regards to physical exercise which is frustrating as she used to love heading to the gym 5 days a week, now Kat manages two (virtual) classes a week. She struggles to walk long distances due to joint pain and getting short of breath.
Sarah Cox
Age 33, Bristol
Sarah suffers with Scleroderma, Raynaud’s, Interstitial Lung Disease, Systemic Lupus Erythematosis
Sarah used to work for Avon and Somerset police as police staff but had to stop working due to ill health.
She was initially diagnosed because her hands and feet were turning a dark shade of purple when cold or stressed, and started getting painful sores on her fingers. Blood tests were done and it was confirmed that there were underlying conditions which needed investigating.
Sarah was really afraid because for quite some time, and remained unaware of what her diagnosis meant.
“It took me about 6 months to ask my Rheumatologist if I was going to die because I couldn’t bring myself to ask the question despite it being at the forefront of my mind”.
To date she has had over 5 surgeries including 34 amputations, the most recent being the removal of her index finger and knuckle, leaving her with the function and appearance of half a hand. This has resulted in significant dexterity issues and many simple tasks are now not easy to perform.
“Scleroderma is my life because it is my body. It affects every single thing that I do”.
Sarah suffers with Scleroderma, Raynaud’s, Interstitial Lung Disease, Systemic Lupus Erythematosis
Sarah used to work for Avon and Somerset police as police staff but had to stop working due to ill health.
She was initially diagnosed because her hands and feet were turning a dark shade of purple when cold or stressed, and started getting painful sores on her fingers. Blood tests were done and it was confirmed that there were underlying conditions which needed investigating.
Sarah was really afraid because for quite some time, and remained unaware of what her diagnosis meant.
“It took me about 6 months to ask my Rheumatologist if I was going to die because I couldn’t bring myself to ask the question despite it being at the forefront of my mind”.
To date she has had over 5 surgeries including 34 amputations, the most recent being the removal of her index finger and knuckle, leaving her with the function and appearance of half a hand. This has resulted in significant dexterity issues and many simple tasks are now not easy to perform.
“Scleroderma is my life because it is my body. It affects every single thing that I do”.
Hannah Stevens
Age 25, Birmingham
Hannah was working as press officer for SRUK when we first met and was passionate about raising awareness for the scleroderma as she also suffers from the disease.
Hannah’s symptoms began when she was 14 and it’s fair to say she has wrestled with the condition ever since. It took nearly a decade for her to get a confirmed diagnosis.
Hannah suffers with localised scleroderma, sometimes known as generalised plaque morphea, which means that it affects various parts of her skin. It also causes joint pain and fatigue.
As you can see form the photos, you could never tell that Hannah is suffering from anything just by looking at her fully dressed, but the localised Scleroderma is obvious once she reveals the scars on her stomach.
When you meet Hannah, you cannot help but be in awe of her energy and positive outlook and other sufferers are very comfortable opening up to her. Her body confidence is inspiring and she is active on social media making sure that Scleroderma is always at the forefront of conversation.
“I’m not sure if I will ever have a life that’s not impacted by the symptoms of scleroderma but I have learned to embrace my ever-changing scars. They may look different from week to week, and I may never stop acquiring new ones, but I love every single one”.
Hannah was working as press officer for SRUK when we first met and was passionate about raising awareness for the scleroderma as she also suffers from the disease.
Hannah’s symptoms began when she was 14 and it’s fair to say she has wrestled with the condition ever since. It took nearly a decade for her to get a confirmed diagnosis.
Hannah suffers with localised scleroderma, sometimes known as generalised plaque morphea, which means that it affects various parts of her skin. It also causes joint pain and fatigue.
As you can see form the photos, you could never tell that Hannah is suffering from anything just by looking at her fully dressed, but the localised Scleroderma is obvious once she reveals the scars on her stomach.
When you meet Hannah, you cannot help but be in awe of her energy and positive outlook and other sufferers are very comfortable opening up to her. Her body confidence is inspiring and she is active on social media making sure that Scleroderma is always at the forefront of conversation.
“I’m not sure if I will ever have a life that’s not impacted by the symptoms of scleroderma but I have learned to embrace my ever-changing scars. They may look different from week to week, and I may never stop acquiring new ones, but I love every single one”.
Tarra Carrington
Age 48, Nottingham
Tarra is a very striking woman, and it is not clear that she is suffering with any serious illness from the outside. It is only when Tarra explains what she has endured in the past three years that you sense the massive effect that suffering with scleroderma has had on her life.
Tarra was first diagnosed with scleroderma in July 2016, and the disease progressed with alarming speed, quickly affecting her mobility, and making pain a constant companion.
“Everyday tasks such as washing, dressing and brushing my teeth were becoming increasingly difficult,” Tarra explains. “I could no longer wear certain items of clothing because I couldn’t bend my elbows, and I had trouble sleeping as my skin was tightening all over my body.” In addition to the constant pain of her rapidly tightening skin, Tarra experienced severe acid reflux, a common symptom for scleroderma patients, robbing her of even the everyday pleasure of eating a good meal. “With lack of sleep, constant pain and fatigue I had become a shadow of my former self,” Tarra remembers.
Seeking some relief from the rapid progression of her scleroderma, Tarra made the difficult decision to undergo an Autologus Stem Cell transplant in May 2017. “It was a gruelling procedure,” Tarra admits, “but according to my doctors I sailed through it without many problems.” The procedure finally gave Tarra some relief from her daily struggles with the disease.
Tarra is passionate about raising aware of the disease and is very active on social media and happy to share her experiences of living with scleroderma with others.
Tarra is a very striking woman, and it is not clear that she is suffering with any serious illness from the outside. It is only when Tarra explains what she has endured in the past three years that you sense the massive effect that suffering with scleroderma has had on her life.
Tarra was first diagnosed with scleroderma in July 2016, and the disease progressed with alarming speed, quickly affecting her mobility, and making pain a constant companion.
“Everyday tasks such as washing, dressing and brushing my teeth were becoming increasingly difficult,” Tarra explains. “I could no longer wear certain items of clothing because I couldn’t bend my elbows, and I had trouble sleeping as my skin was tightening all over my body.” In addition to the constant pain of her rapidly tightening skin, Tarra experienced severe acid reflux, a common symptom for scleroderma patients, robbing her of even the everyday pleasure of eating a good meal. “With lack of sleep, constant pain and fatigue I had become a shadow of my former self,” Tarra remembers.
Seeking some relief from the rapid progression of her scleroderma, Tarra made the difficult decision to undergo an Autologus Stem Cell transplant in May 2017. “It was a gruelling procedure,” Tarra admits, “but according to my doctors I sailed through it without many problems.” The procedure finally gave Tarra some relief from her daily struggles with the disease.
Tarra is passionate about raising aware of the disease and is very active on social media and happy to share her experiences of living with scleroderma with others.
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