My name is Madeline and I am 25 years old.
I live with a condition called erythropoietic protoporphyria or EPP. EPP is a rare metabolic disorder that impacts my production of heme.
EPP has affected my life since I was an infant, however, I was not diagnosed until I was 19. Basically, when I am in sunlight (direct or reflected) for varying amounts of time (can be as little as five minutes) I will develop an excruciating burning pain, swelling, redness or blistering on the skin that is exposed to the sun.
This pain can last days and causes extreme sensitivity to temperature and touch. During these times, I am unable to sleep, participate in daily living or find any relief from the pain. The parts of my body that are affected most are my hands, feet and arms. If I have a severe reaction, I am left with scaring that may or may not fade over the years.
Being a young person living in coastal Australia, having EPP makes it very difficult to enjoy and participate in outdoor activities such as going to the beach, playing sport, going on holidays and even driving. Activities that most young people take for granted and have been able to experience throughout their life. However, I have discovered Solbari!
Since using Solbari products I am now able to enjoy being outside. If my skin is covered using Solbari products I do not have these severe episodes. Being a young woman, I love that Solbari looks like regular fashion. My confidence to cover up and embrace my condition has increased and now summer is even my favourite season! Solbari has allowed me to prevent flare-ups rather than treat them.
I am glad to share this with you as your products have truly affected the way I live my life. Thank you.
Thank you Madeleine for helping raise awareness for skin conditions by sharing your story with us and our Solbari Community.
The Solbari Team
In this blog we explore if it is possible to get sun burnt through clothing. People don't realise that they are routinely exposed to the sun through their regular clothing. Dermatologists agree that the best way to protect yourself from the sun is to wear UPF 50+ sun protective clothing. UPF 50+ means that at least 98% of UV rays are blocked. UPF 50+ is the highest accreditation for sun protection achievable in the World.