What changed my life with severe eczema?
My name is Acacia, I am a 17-year-old who lives in Newcastle, NSW. I hope my story gives hope to other people suffering severe eczema.
I have suffered with severe eczema since I was one month old. The eczema limited my life experiences. I also have asthma, allergies including food allergies and I carry an EpiPen®. Until recently, my life has been far from “normal”. For the most part, this is because of my severe eczema.
As a young child I was constantly bullied by other children, and even adults at times, due to the way I looked. My eczema made me look different to the people around me. Strangers would even question my parents about what was wrong with me. My skin was almost always red; the eczema flared up and I would be covered in sores that would bleed. I’ve had many staph infections over my lifetime. To manage my severe eczema (from when I was a baby) my parents or I have had to apply moisturisers and steroid creams/ointments several times a day. When I got older I started taking daily antihistamines. When I started kindergarten, I had to carry my creams in my school bag. The teachers and teacher aids were a great support and they did their best to give me relief when it was unbearable during school hours. Sometimes I would even sit with a cool wet face washer to relieve my skin from the pain I had. My skin was continuously itchy and it became easily infected. I was often extremely irritable as my eczema deprived me of a decent night’s sleep for most of my life.
I have had hundreds of medical appointments. My parents took me to Sydney’s Children’s Hospital at Westmead and other local hospitals in Newcastle. There are too many appointments to count. Up until late 2019, I’d had many hospital admissions because of the severity of my eczema. My regular appointments include those with my GP, dermatologists, psychologists, psychiatrists, immunologists, respiratory specialists and others.
My parents and I have tried everything possible including different moisturisers and creams, steroid ointments, nasal sprays, medications that are used for chemotherapy (Methotrexate) and full body wet dressings that were done daily for weeks on end. My parents bought an infrared therapeutic sauna for home, I have had UV light treatments and bleach baths. I was regularly on antibiotics. Some of the medications I was on caused weight gain. I have always required regular blood tests. My parents had also removed all the carpet from our house to reduce the amount of dust mites in the house and I’ve had special bed linen for people with allergies.
When I was younger my severe eczema would stop me from having sleepovers as I was uncomfortable to stay at any of my friends’ houses. It was a huge effort to pack what I needed to take with me just for the night. I worried that my skin would bleed onto their sheets if I scratched too much during the night. I would feel ok if my friends stayed at my place. I always felt better knowing that my home was my safe place, as there were times when I didn’t want to walk out of the front door.
Growing up, I felt insecure about the way I looked. Whether it was winter or summer I would cover all my skin. I would go to the beach with friends and family and I would cover up from head to toe. I knew how good it would be for my eczema if I swam in the salt water, but what people never understood was the salt water was so unbearable. It would sting and burn so much, I would get very upset and I would want to leave the beach straight away.
With my eczema impacting so severely on my life, as a teenager I had another, sometimes not so obvious, illness appear. My mental health was declining rapidly and I started suffering daily panic attacks as my anxiety was through the roof. I was and still am suffering from depression to this day. With the support of my family and my doctors I was able to get help.
Fast forward to school holidays September/October 2019
My Mum received the phone call that was to be life-changing! Thanks to the extremely hard work of my immunologist, my dermatologist and another doctor at the John Hunter Hospital, I was given the opportunity to start Dupilumab (Dupixent) on compassionate grounds. I was extremely overwhelmed with this fantastic news. My emotions were everywhere. I was feeling happy and sad all at the same time. I even felt as if I did not deserve this treatment at all. I wondered why they picked me and thought that someone else may need it more than I did even though the pain I had suffered for the last 17 years had crippled my life.
I am not a fan of needles but Dupixent is administered fortnightly via a needle. I have had extremely positive results. Dupixent has been life changing (even lifesaving). It has given me a much better life. The results were remarkable in the first month and my skin has continued to improve daily. I am happy to have it as it has improved my quality of life so much. I’m finally now feeling more confident in my own skin. I now wear clothing that does not cover my whole body. I also now have the confidence to go to a beach and swim and I’m not worried if people see me in swimwear. I am also socialising again! I love being with friends and can leave the house without being anxious. I sleep a lot better and feel I have self- worth again. I now look forward to a better and brighter future.
Again, I would also like to thank all the members of my medical team for giving me the opportunity to change my life in such a positive way.
Editor’s note: Dupixent® is soon to be an affordable medication for Australians with severe eczema, aged 12 years and over. Allergy & Anaphylaxis Australia implores Sanofi and the Australian government to expedite Pharmaceutical Benefits Scheme (PBS) listing of Dupixent® so that people like Acacia, can access the life changing treatment they need. They have suffered in isolation for too long.
Content created September 2020