Lisa has a success story to share to inspire you to fight back and take risks.
My name is Lisa and I have a condition called erythrodermic eczema which causes severe inflammation and swelling of the skin. Swelling which is deadly if not treated properly and on time. I developed the condition in my 30s. It appeared as eruptions due to underlying conditions paired with eczema anaphylaxis shock. This was awful to control.
Throughout my life, I’ve worked hard to get to where I wanted to be. I had learning challenges so developed my own techniques and achieved multiple qualifications to gold medals and awards. I started off in the Arts and then went on to re-study and complete the whole GNVQ in Business. I even obtained an award from our Prime Minister for achievement at the time. I’ve always loved learning, and that’s what drives me to keep trying and overcome any challenges I face.
Following this, I went back to university to get a Human Resources degree obtained from the CIPD. I went from being a girl from an inner-city London council estate who had to work in supermarkets and on market stalls, as well as youth working, to fund her education, to getting hired by a leading business recruitment firm in a graduate scheme and eventually moving on to work for a global consultancy. I then started coaching people in training and projects, before taking up business coaching and consultancy with sole traders and start-ups. All of which I was hugely proud that I’d achieved.
Life was great, but then one day out of the blue, my face, neck, chest and arms started to swell up and I could hardly see. I was in so much pain. I’d just been at a client lunch, and was absolutely fine, so I had no idea where this swelling had come from. Then it began to happen more and more frequently. I ended up being hospitalised for days on a life support machine with no idea of the trigger. It became a vicious cycle, impacting the colour of my skin and causing patchiness called poikiloderma – I felt like I wasn’t me anymore.
Lisa’s condition caused swelling and patchiness
Unfortunately, this meant I had to give up on my successful career because it was becoming unmanageable. I didn’t want to be seen by family and friends, work colleagues and clients in my swollen state and needed a lot of time off work. My last role was very unsupportive, and I found it hard to focus on my career anymore, with the condition constantly changing. My family and the people around me could not control what was going on and they were scared to have me at home until further tests and investigations were in place. Finally, I was told there is a deadly skin condition called erythrodermic eczema which needs to be controlled and treated, and that was what I had.
I was regularly in hospital, due to the consequences of the swelling and blistering. Countless drugs were given to me, but nothing helped. As erythrodermic eczema is an autoimmune condition, it makes me more vulnerable to infection and disease and affects your organs. I started then to get dangerous infections and couldn’t see family for weeks from being isolated in hospital. I had to undergo biopsies and procedures, and take daily antibiotics, steroids and intravenous treatments. I even had to learn to walk again. I’d lost my hair and my nails wouldn’t grow. It was really painful.
I became more stressed, and my anxiety was at an all-time high. I also went through a number of tough times personally. Stress contributes to your immune system being lowered, and I failed two high-level immunosuppressant treatments, as a result. I was at an all-time low, and it was heartbreaking for my family and friends to see, which hurt me too. No matter where I was, the condition would affect me, and it got more frequent. I was scared to go out, even to sleep. I was constantly checking myself. I couldn’t commit to anything, as it would flare randomly, and then the cycle would start all over again. In these situations, you find out who is going to stand by you.
One day, a meeting was called with a number of health professionals in my Trust. I sobbed and told them I couldn’t bear this any longer. I was told by my then consultant that there was a treatment that I could be eligible for, if my body would take it after everything I’d been through. Whether I was strong enough was the concern, and at first I was turned down for it, but after review, we ended up going ahead with the treatment. I said I would do it, but I would need to be assessed and kept in a high-intensity ward on my own for some weeks, as well as treated for underlying conditions.
I was discharged by a group of leading medical professionals to somewhere I would get more immediate access to specialist care for rare immune system problems. Within one week, a leading professor and their team took me on and told me that they would need to keep me in for a while to see if my body could handle the treatment. After a few more weeks in hospital, I was transferred to them.
I had just won a legal battle, so my stress levels were fairly high, but I took the chance and let them keep me in after a long conversation about my risks. I was brought in to be assessed by the professor for nearly three weeks and after months of monitoring, I was given a new immunosuppressant, and referred to Changing Faces.
Services like Changing Faces’ Skin Camouflage are gold dust. I found a new lease of life.
At first I thought “why do I need skin camouflage?”, but when I looked in the mirror at the time, I could start to see myself again. I was emotional, but it was like a breath of fresh air. The practitioner was absolutely amazing. They made me feel like a person.
I wasn’t able to wear any makeup before in case I would swell up, but the Skin Camouflage Service found makeup to cover my scarring which wouldn’t irritate me. The tutorial for how to apply the makeup was so useful – the practitioner was attentive and amazing. I was there for hours, as it had to be such a specialist appointment, but I really needed this while I was recovering from everything that had happened. Services like this are gold dust. I found a new lease of life.
I also attended Changing Faces counselling services and paired with my own strategies and research to cope, it enabled me to come to terms with the changes. I was able to make peace with my life and had hope again. I found the Changing Faces website so informative and that really helped as well. I started learning more and came up with new strategies, writing notes to work around everything. It gave me some light in my life.
I’ve accepted the fact that I’ll be in treatment forever, but now my fighting spirit is back. I’ve got into my creative side again, taking my hobbies back up and seeing my friends. I’m planning my career and looking forward to using all my skills and experiences once more, but also letting go of people and situations that contribute to my illness. Standing up for yourself and your rights is so important. By having hope and not being a victim of my past, I’ll get through these situations in my life.
We are all allowed to have a happy life, and I want to make that a reality for others, as well as myself personally and professionally.
I’ve started putting goals in place to start my new business ventures. One of which is helping other people who have gone through any type of trauma or difficult situation, encouraging them to keep having hope that it can get better. My aim is to provide light and confidence to people.
I have spoken publicly about treatments for eczema globally as part of research groups, and hope that using my voice can ensure others don’t have to go through the trauma that I’ve been through. I want to help people fighting back from illness in whatever way I can, so they can get back to their lives.
I kept a poetry and story memoir to record my experiences of the difficult times, not just regarding my visible difference, but of all the challenges I have faced. Reflection on life is essential, it’s great therapy all around, and has enabled me to come up with strategies to help myself and others. As part of my coaching business, and generally in life, I would love to continue speaking up about my experiences and raise awareness of visible differences in workplaces and beyond. I qualified in business planning and holistic healing, and moving forward next year will be the start of a new venture for me.
Everyone deserves to be treated the same, no matter what you’ve been through or what you look like. We are all allowed to have a happy life, and I want to make that a reality for others, as well as myself personally and professionally. I’m ever grateful to Changing Faces and my loved ones for the support they gave me, as well as my priest and the other charities, health professionals, motivational speakers and holistic healers I’ve come across along the way. I wouldn’t be at this point without them.
Be strong and know things can turn around – don’t be afraid. I have faith in this bright future.
