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Alexzandra’s Inspiring Interview: Topical Steroid Withdrawal (TSW) and the Challenges of living with a Chronic Skin Condition like Eczema.

Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.

“In this week's inspiring interview, Alexzandra—who lives in Cornwall, specifically the Lizard, the most southern point in the UK—shares her journey with Eczema and Topical Steroid Withdrawal (TSW) syndrome. I had the pleasure of speaking with her via video call at the end of March, and her radiant positivity was evident throughout our conversation.


As we talked for over an hour, she opened up to me about the world of Eczema and the true impact it can have on individuals, extending well beyond the surface of the skin. This challenged many of my preconceptions about Eczema and its associated conditions. It was an eye-opening experience as I learned about the multifaceted struggles and challenges faced by those with skin conditions.  


Alexzandra's infectious smile and vibrant energy illuminated every aspect of our conversation. She is an absolutely beautiful human, both inside and out, and I am very grateful to have her involved with the project! Her story is not just inspiring but also educational, and I hope it will help raise awareness of skin conditions and their impact on people's lives.” - Ellie Howe, creator and author of 'A Note of Hope.'

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A girl sitting in a coffee shop, resting her face on her hand drinking an orange juice
A Note of Hope Inspiring Interviewee Alexandra

Eczema, a relatively common skin condition which affects millions of people worldwide, is often characterised by inflammation, redness, itching, and, in severe cases, blistering or oozing patches of skin. While the exact cause of this condition remains unknown, experts believe that it is likely caused by a combination of genetics and environmental factors. In the UK, approximately 1 in 5 children and 1 in 10 adults live with Eczema, which means that it is a familiar part of many people's daily lives, and most of us may have experienced it directly or indirectly.


However, despite its prevalence in our society, it is still a widely misunderstood condition often reduced to simplistic characterisations. But for some individuals, Eczema can be a debilitating, painful, and isolating illness that significantly affects their quality of life.


In this inspiring interview, Alexzandra shares her journey with atopic dermatitis—the most prevalent form of Eczema. Atopic Dermatitis is something you’re born with, meaning there is no cure available and people can only manage their condition. Reflecting on her experience, Alexandra poignantly remarks, "Because it's such a common condition, people tend to have a lot of misconceptions about it. They think it's just dry skin or your skin is a little itchy." However, as Alexandra's narrative unfolds, it becomes increasingly clear how her journey challenges these generalised perceptions. Her story sheds light on the often overlooked aspects of living with a chronic skin condition like Eczema.


"I've had Eczema since I was a baby. People tend to have misconceptions about it and assume it's just dry skin and itchiness. But my experience with Eczema has been far worse than that."

Alexzandra was diagnosed with atopic dermatitis in her childhood. This is a common condition among infants and young children, who are more vulnerable to Eczema due to several factors, such as genetic predisposition, an immature immune system, and exposure to environmental triggers. Although many assume that most children outgrow Eczema, for some, like Alexzandra, it can persist into adulthood and become a lifelong challenge.


While many people can manage their Eczema symptoms through careful skin care and avoiding triggers such as detergents, fragrances, and even certain fabrics, others may still experience severe symptoms despite these measures. Alexzandra and her parents were among those who, after trying all of these options and consulting multiple doctors, still couldn't find anything that completely relieved her severe symptoms. 


In this situation, NHS guidelines recommend using Topical Steroids, a type of medication available in various forms such as creams or lotions, as the next course of treatment. Although they don’t offer a cure, Topical Steroids can reduce inflammation and suppress the immune system's response, relieving the itching, redness, and discomfort commonly associated with Eczema. They can be applied directly to the affected skin, making them a targeted treatment that minimises the risk of side effects associated with oral medications. One of the primary benefits of Topical Steroids is their rapid onset of action, which allows them to provide relief within a relatively short period. This quick relief is particularly valuable during acute Eczema flare-ups when symptoms are most severe and debilitating.


Although her eczema was minor as a child, Alexzandra was prescribed Topical Steroids when she was six years old to control her Eczema.


A picture of a girls face with extreme dry skin.
Alexandra lives with a chronic skin condition, Eczema and TSW.
"Many people have opinions or advice when it comes to Eczema, whether they have it or know someone who does. They're eager to share their knowledge when they see or hear about it." 

As she entered her teenage years, Alexzandra felt the pressure to have beautiful, flawless skin - as many do. For young people navigating the world of Eczema, it can often be difficult to escape these societal expectations, and the pursuit of clear skin becomes not only a desire but also a desperate attempt to fit in and feel accepted.


Adolescence is a time when many individuals struggle with self-doubt and insecurities, and having a visible skin condition can make these feelings even more overwhelming. This pressure, along with the relentless itching and pain associated with the condition, can drive people to desperate measures. For example, a quick search on social media brings up various ads for skincare products that make unrealistic and outrageous promises, as well as numerous influencers presenting strange homemade remedies  - all marketed as cures for conditions like Eczema. Furthermore, well-meaning but often misguided advice from others can contribute to the burden people with skin conditions carry. Friends, family, and even strangers often have good intentions, but may inadvertently worsen people's self-consciousness by offering unsolicited remedies or suggestions for "fixing" their skin. 


With so much conflicting information and advice, it can be challenging for people to determine what products/information could be genuinely helpful and what is a scam. Individuals with these conditions may be tempted to try anything that promises relief, which can be risky. There is always a chance that trying something new could trigger a debilitating flare-up. Unfortunately, this happened to Alexzandra when she was a teenager. Alexzandra’s eczema was manageable, but she tried a cream that someone she knew promised would be a "miracle cure" for dry skin. However, the cream caused a severe allergic reaction all over her body, leaving her bedridden and in considerable pain.


Alexzandra's experience of, in her own words, "falling into the rabbit hole" of listening to others' opinions highlights the overwhelming and often toxic nature of advice culture surrounding skin conditions. Instead of offering genuine support, the flood of recommendations can leave individuals feeling overwhelmed and invalidated in their experiences.


After this severe reaction, Alexandra was prescribed a more potent steroid cream to help soothe the widespread inflammation and weepy open sores on her skin. These strong formulations are known for their powerful anti-inflammatory effects and can rapidly reduce symptoms and control flare-ups. However, they come with a high risk of side effects, including skin thinning, visible blood vessels, stretch marks, and, in severe cases, skin atrophy and systemic absorption that can lead to adrenal suppression.


Alexzandra initially found relief from her allergic reaction by using these potent steroids, but their prolonged use had significant consequences as her skin became reliant on them, and she became increasingly sensitive to their effects. Whenever she tried to reduce her steroid use or switch to an alternative moisturiser or cream, she experienced recurring full-body reactions similar to her initial ordeal. Despite trying different approaches, such as spending time in the sun - which is known to be helpful for many eczema sufferers - or exploring alternative treatments, she found that steroid creams only provided temporary relief before her Eczema would inevitably resurface. It would spread and manifest in unpredictable ways, making it difficult to manage her condition.


A girl with dry skin.
An example of one of Alexandra's flares.
"There were periods where my skin was really good, but then I'd have a full body flare-up with weeping sores and red raw skin."

Throughout her interview, Alexzandra encapsulates the rollercoaster of pain and frustration that many Eczema sufferers endure. "It's almost like nothing can compare to the pain," she says, "it's not just a physical pain, it's a horrific sensation you can't escape."


Alexzandra recalls a time when she suddenly had an allergic reaction to the laundry detergent her parents were using. Whenever she wore any of her clothes, it caused raw, open wounds all over her skin. Despite trying to identify the cause of her reaction, no one could figure out what was causing it, and this cycle continued for weeks. Even the slightest touch would cause unbearable itching and pain; she only had relief by soaking in a warm bath. 


Alexzandra’s story demonstrates how Eczema can significantly impact and limit a person's life. While not commonly acknowledged, Eczema can impact every aspect of a person's life, from their clothing choices to the hobbies they pursue. One of Alexzandra’s favourite pastimes was experimenting and applying makeup, but this had become challenging due to her frequent skin flare-ups. Her dry skin made it difficult to apply makeup, and even when she used moisturisers, her skin would flake off during application. Consequently, she lost much of the joy she once found in it.


Despite her past traumatic experience, Alexzandra has remained open to trying out alternative treatments and home remedies to try and help her skin. Nevertheless, she has always found herself going back to the doctor for treatment and being prescribed oral and topical steroids.


"All of my employers knew I had Eczema, and I think because Eczema isn't seen as a serious chronic illness, a lot of the time, they didn't believe what I was telling them."

As Alexzandra transitioned into adulthood, the demands of a regular office job worsened the difficulties caused by her health conditions. She began to feel immense pressure to be present at work all the time, which led her to become increasingly dependent on Topical Steroids to alleviate the inflammation of her skin. However, this cycle of reliance soon took its toll, with the gaps between having healthy skin growing increasingly shorter. "If I wasn't using steroids, then my skin was unbearable," Alexandra continues, "It eventually got to the point where it started affecting my work." Reflecting back, Alexzandra is now aware that steroids had caused significant damage to her skin barrier, and her skin had no way to protect itself from external triggers.


Furthermore, Alexzandra sheds light on another distressing phase of Eczema. "In the weeping stage, your body is just secreting this really foul-smelling liquid," she shares frankly. "I know that's gross, but there's no other way to put it. You feel so dirty." The weeping stage is characterised by fluid-filled blisters that tend to ooze, leaving the skin damp and sticky and causing intense itching and discomfort. She vividly describes how her skin would stick to her clothes, as well as how her face would stick to her pillow when she tried to sleep because of the weepy, open sores that covered her body. Alexzandra admits she could only relieve the constant itching during the weeping stage by taking a hot shower and scalding her skin, although she recognised this would probably do more damage long-term.


Alexzandra had to switch jobs multiple times and reduce her working hours to try and find a balance in managing her condition effectively. However, even after putting in her best efforts to find accommodating employment, the misconceptions about her condition continued to haunt her at different workplaces. Some of Alexzandra's employers were sceptical whenever she requested accommodations, and she confides, "I think they thought I was just taking advantage, but they didn't understand that, at times, my skin was a weeping mess, and I physically couldn't put on clothes."


Eventually, Alexzandra came across an online community of people in a similar situation. Like her, these individuals had been using topical steroids to alleviate the symptoms of their Eczema flare-ups. However, they soon discovered that they were now grappling with a condition known as Topical Steroid Withdrawal (TSW) Syndrome.


Topical Steroid Withdrawal Syndrome is a skin condition caused by the prolonged use of Topical Steroids to treat a chronic skin condition. After discontinuing these steroids, particularly after prolonged usage or from applying increasingly large amounts, those affected may experience severe skin symptoms such as intense burning, itching, stinging, and rebound redness. Some individuals may also experience oozing, crusting, and flaking of the skin. While these symptoms are usually limited to the areas where the steroids were applied, they can spread to other parts of the body. The symptoms of this condition can last for months or even years after discontinuing the use of steroids, making it difficult to manage. In some cases, the symptoms may worsen over time, causing significant discomfort and distress.


 
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To find out more about Topical Steroid Withdrawal, click the link below:

Topical Steroid Withdrawal

Topical steroid withdrawal (TSW) occurs when long-term use of topical corticosteroids is stopped, leading to red, inflamed, painful skin. These medications are commonly prescribed to treat inflammatory skin conditions like eczema. Symptoms include burning, itching, peeling, and oozing, often worse than the original condition. This happens because the skin becomes dependent on the steroids, causing a severe reaction when they are discontinued.


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Girl with a bandaged face.
Alexzandra highlights the often unseen nature of chronic skin conditions
"It was harrowing to realise that what I am experiencing is topical steroid addiction, and it's not classed as eczema anymore. It's something different that has been caused by using the strong steroids my whole life."

As the toll on her physical and emotional health became too much to bear, Alexzandra made the difficult decision to leave her job and, together with her partner, move back to her parent's home. They settled into an annex attached to the family home, and Alexzandra began withdrawing from steroids and from society altogether.


"I locked myself away for the majority of the time I was ill," she shares, "The pain of not being able to put on clothes was bad enough, but the thought of people seeing me made it even worse."


It is not uncommon for individuals with this condition to experience a strong desire to hide. The condition's physical manifestations are already an overwhelming emotional challenge, but people can also experience feelings of shame and embarrassment because of the condition's visible nature. The fear of judgment from others can be paralysing, causing individuals to feel isolated and alone. While much attention is given to the physical effects of Eczema and Topical Steroid Withdrawal, it is crucial not to overlook its emotional impact.


As she reflects on her journey, Alexzandra shares that she used to believe that topical steroid withdrawal was only a risk for those who recklessly used potent steroids all over their bodies and ignored medical advice. However, during her treatment, it was doctors who prescribed potent steroids for her face and body, which led her to believe that she wouldn't be affected by withdrawal or the severe side effects that are usually associated with them.


Alexzandra's experience highlights a common misunderstanding among people who rely on topical steroids to manage skin conditions such as eczema. In Alexzandra's case, she trusted the consistent advice of medical professionals without questioning the potential long-term effects. While trusting healthcare providers is important, it is equally essential for individuals to advocate for themselves, ask questions, and seek additional opinions if necessary.


Alexzandra stopped using steroids in June of last year, and although her skin has improved, it is still currently in the process of healing.


"Without people on TikTok showing me they had skin like mine and what they were doing to heal, I wouldn't be in this position. I would probably have gone back to steroids or still be in bed, unable to do anything. So thank you, Tiktok!"

In the age of social media, platforms like TikTok have become more than just avenues for entertainment—they've become vital sources of information and support for individuals facing various challenges. For Alexzandra, TikTok proved to be a lifeline in her journey with topical steroid withdrawal syndrome.


"I can't emphasise enough how much the TikTok community really, really helped me," she shares, "There were so many people talking about dead sea salt baths, which I now take every couple of days, and red light therapy, which can actively reverse the skin barrier damage caused by steroids." These insights, gleaned from fellow TikTok users sharing their own experiences, empowered Alexzandra to take proactive steps in managing her condition.


Additionally, Alexzandra explains that she's currently taking immunosuppressants to reduce inflammation. These medications can effectively manage symptoms and improve quality of life by reducing inflammation and preventing immune-mediated damage to the skin.


"Luckily, I managed to go to the doctor and book a dermatologist appointment before I went through Topical Steroid Withdrawal, so I was able to get immunosuppressants—which is something I learned through TikTok!". It's important to note, however, that while these alternative therapies and medications hold promise for managing Eczema and Topical Steroid Withdrawal, they carry potential risks and side effects - making it essential for individuals to consult with healthcare professionals before incorporating them into their treatment regimen, particularly for something like immunosuppressants. 


Alexzandra recognises the challenging journey many individuals face in obtaining recognition for their condition. "A lot of doctors still don't believe in it," she laments, "They think people are making it up because they are scared to be on steroids." Despite this scepticism, she notes that the NHS is beginning to recognise Topical Steroid Withdrawal as a legitimate condition, thanks partly to the advocacy efforts of individuals sharing their experiences on platforms like TikTok.


As awareness of conditions like Topical Steroid Withdrawal continues to grow, platforms like TikTok play a crucial role in amplifying voices, dispelling myths, and fostering a sense of solidarity among those navigating similar experiences. For Alexzandra and many others, TikTok has proven to be more than just a social media app—it has been a beacon of hope and support in times of uncertainty and struggle.


A girl and guy sitting at a table drinking
Alexzandra with her partner.
"Everyone with eczema or Topical steroid Withdrawal deserves to have their voice heard, no matter how big or small their experience. You deserve to be listened to, you deserve to be supported. Everyone deserves a voice, no matter how society views your chronic illness.”

"I think one of the big things - and I'll try not to get emotional now - is the acceptance and knowing there are experiences and things that I've had to miss out on because of my condition" Alexzandra vulnerably shares. "At 27 years old, I technically still live with my parents," she admits, acknowledging the many societal pressures and expectations that can weigh heavily on her. "I get the feeling of, 'You should be in London, like your friends, doing creative things'." However, her struggles with Eczema and navigating Topical Steroid Withdrawal have meant that she has had to sacrifice opportunities.


Yet, despite these difficult feelings, Alexzandra has unearthed a profound truth—that her journey is uniquely hers and she is exactly where she's supposed to be. As she continues her journey of healing and self-discovery, she reflects, "I have accepted that my present situation is where I'm meant to be, and it's leading me towards a better future." Emphasising the importance of acknowledging her limitations and respecting her need for rest and recovery. "I may look physically better, but I'm still going through trauma." She admits.


By sharing her story, Alexzandra hopes to raise awareness and encourage others to question their assumptions about severe Eczema and the role of steroids in its treatment. "If anyone thinks that they have really severe eczema and has been using steroids their whole life," she explains, "I wanted to share the fact that it might not just be eczema." Her words carry a weight of caution, urging individuals to consider the possibility of underlying factors beyond what meets the eye.


Hoping to empower others to take control of their health and advocate for themselves, Alexzandra concludes, "If anyone could see or hear from my experience and be very, very cautious when it comes to using steroids. Because it's very easy to just keep using them."


 
A girl holding a black kitten in her arms
Alexzandra at home with her cat
“It’s about the “soft life” when you have a chronic illness, and I think that can be a really beautiful thing.”

Amidst the challenges and uncertainties, Alexzandra has discovered that happiness lies in embracing the simple pleasures of everyday life and nurturing a deep sense of self-care and acceptance.


Happiness, she has come to realise, doesn't have to conform to societal expectations of having a large social circle and a constant stream of exciting plans. "Sometimes, it's about finding contentment in the little moments," she shares, "like playing cosy games with your partner in the comfort of your cottage." 


Alexzandra reflects on the drastic changes in her life over the past 18 months; She used to live in a flat in a lively coastal town with her partner, where they had a bustling social life filled with many friends and frequent outings. However, now she lives in one of the most remote and isolated areas of the UK with her family and partner for company. The contrast between her past and present could not be more stark.


Despite the initial difficulties of adjusting to the slower pace of life, Alexzandra has come to value the time she spends with her friends, family and partner more than ever. She cherishes the moments of peace she experiences in her new surroundings and has found joy in life's simpler pleasures. Whether it is taking a leisurely walk on one of the secluded beaches that surround her, spontaneously deciding to bake cookies after dinner, or spending quality time with her loved ones, Alexzandra has found a new appreciation for the things that truly matter in life.

A girl, guy and a big curly poodle dog standing on a harbour with boats and the sea in the background.
Alexzandra with her brother in Cornwall, UK.

Furthermore, Alexzandra cherishes the "soft life" that often accompanies chronic illness, and she adorns her space with flowers and quirky decorations ("I just bought myself a neon pink frog light wearing a blue cowboy hat!") to reflect her inner joy. For her, creating and maintaining a comfortable and welcoming environment is essential, especially since she spends a significant amount of time at home due to her chronic illness. Alexzandra recognises the importance of having a sanctuary within her living space, which allows her to relax, recharge, and make the most of her time at home.


Reflecting on her journey, Alexzandra shares, "There was so much pressure for me, especially seeing my friends thriving in their corporate lives. It felt like that's what I should be doing." However, when faced with unemployment and severe illness, she found herself at a crossroads, unsure of her next steps. During this time, she stumbled upon a platform that connected freelancers with businesses. Despite initially putting minimal effort into her profile, Alexzandra soon found herself approached by a company. This opportunity marked the beginning of her journey as a freelancer and eventually led to the establishment of her design & social media agency. 


Living with a chronic illness can be incredibly challenging, not only physically and emotionally but also financially. Many people with chronic illnesses often find it difficult to hold down traditional jobs, which can lead to financial instability. However, freelance work can provides opportunity to generate income on their terms, allowing them to earn a living while accommodating their health needs. 


Through sheer determination and resilience, Alexzandra has transformed her freelance work into a thriving business, securing multiple clients and establishing herself as a successful entrepreneur. "It was such a struggle," she recalls, "but I maintained my work ethic through it all. Freelance work gave me the flexibility to manage my health and earn a living. It wasn't always easy, but I knew I had to keep pushing forward." 


Overall, freelance work offers a flexible, adaptable, and empowering alternative for individuals with chronic illnesses who may face challenges in traditional work environments. By leveraging her skills and abilities in a freelance capacity, Alexzandra can now maintain a fulfilling career without sacrificing her health and well-being. "I always wanted to be freelance, but certain fears held me back," she explains. "It was through getting severely ill that this opportunity came to me, and it taught me that these things will come if it's right for you."


A girl smiling at the camera
Alexzandra reflects on her health journey.
“The community I found was truly transformative for my healing journey. Everyone deserves a support system, and it's out there—you just need to find it. Sometimes, it might not even be directly related to your illness; it could be something entirely different, yet equally uplifting -like ‘A Note of Hope’!”

Dealing with a chronic illness can be a complicated and overwhelming experience, filled with uncertainties and obstacles. However, Alexzandra found healing and strength by seeking support from a community and learning to trust her intuition. Reflecting on her journey, she offers invaluable advice to her younger self and others facing similar situations.


For Alexzandra, discovering a supportive community on TikTok was a game-changer in her healing journey. "The community that I found was definitely the biggest change in my healing," she reflects, acknowledging how it provided valuable educational resources and offered much needed validation and connection in a time of isolation. Alexzandra emphasises the importance of seeking out support networks, no matter how rare or unique one's condition. "There is support out there," she asserts, encouraging others to explore and connect with communities that resonate with them. 


Furthermore, Alexzandra believes that, in addition to seeking professional medical advice, it is essential for individuals to trust their inner voice and intuition when it comes to their health. She understands that traditional medicine can come with pressures and expectations that may not always align with what feels right for each individual; drawing on her own experiences, she can relate to this feeling, "I knew that something wasn't right with how I was dealing with my eczema." 


She advises others to sit with their intuition and not ignore any feelings of discomfort, "You know your body, and you know what's right for you.” Alexzandra believes it is essential to honour one's instincts and trust the messages the body sends, even when it may seem contrary to what is expected. Her advice serves as a powerful reminder that healing is not a solitary journey but one that can be navigated with the support of others and the trust in one's intuition.


 
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Thank you Alexzandra for sharing your inspiring story for the 'A Note of Hope' project.


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