A little insight to my daily life!

The story of Amber

My name is Amber and I live in Queensland. I was born with Netherton Syndrome which is a form of Ichthyosis. Ichthyosis is an extremely rare and incurable condition currently only affecting one in 250,000 people worldwide. This condition makes my skin very red, dry, sore and itchy which causes irritability and makes me prone to infections.

Whilst being on the rollercoaster ride with Ichthyosis, I have experienced the highest of highs and the lowest of lows. Throughout my 16 years, I have undergone many surgeries including surgery on my hips which affected my mobility when I was younger. I first started walking when I was four years old. I have also had surgery to insert a mickey button to help with feeding and gaining weight. One of the symptoms of my condition is short stature so from the age of three to fourteen I went on growth hormone therapy to help maximize my potential height increase. I have been to sydney multiple times to visit a dermatologist who helped me and my family on how to best care for my skin and what the best route and medications would be. I have also seen many other doctors who have prescribed me immense amounts of medications and creams in the effort to help my skin. Ichthyosis affects each person that lives with differently however for me it takes a toll on my day to day life as one day my skin could be feeling pretty good and I am able to go out and do things and the next day I could be laying in my bed feeling really itchy, sick and bearing excruciating pain. This therefore means I never really know what to expect or what the day may hold as my skin can change in a split second.

In my 16 years on this planet I have ticked off some of the biggest things of my life and on my bucket list including swimming in the ocean as it was only this year I was able to go into go in to the ocean as my condition had stopped me from being able to fully experience it and swim in their due to the pain it caused me on previous attempts. Another thing I have also achieved is working in the hair industry currently as tea and tidy. I have had to overcome the setbacks my condition caused me from entering my dream career as a hairdresser but I can officially say that I am starting my Cert II in salon assisting this year and one step closer to my dream career. Throughout my life I have had to fight for the things I want as they dont come as easily living with a condition. I have also gone on adventures of a lifetime to Bali and made memories like no other with those who have gotten me to where I am today.

No, I don’t look like your average person, I do get the often stare or two and have to deal with consistent comments like “are you sunburnt?”. These are hard to deal with, but I often tackle them by educating, as I know that it is a very rare condition that not many people know about. If I could share one piece of advice to the wider community in regards to those who comment on people’s appearance and conditions is don’t look at people for their appearance but their inner beauty. Those with conditions have so much to offer and are so beyond gifted to the word. I would recommend not spurting out comments and assumptions as you dont know our background story and really what your comment about people’s appearances can do to not only to their mental but physical health. I don’t mean don’t ask questions as it is common human curiosity but do it in a way that is respectful to both yourself and the person receiving the comment and do it in a way where you want to be educated and learn more about their condition.

I get asked what my daily routine looks like and to be quite honest it’s a lot but to break down as it can change but basically it’s two showers a day, a whole lot of cream and medications as well as antibiotics to keep any infection away. My skin goes through good days and bad days so that really changes how I tackle my routine.

To say I have been blessed with the best people who have each been by my side on this ride is not a lie. I wouldn’t be where I am today without the support of my family, friends, coworkers and teachers who have all helped me in more ways then they will ever know.

My message to those living with a rare disease is that you are going to have good days and bad but take each day as it comes. Use it as growth. You are doing an amazing job at where you are in life. To be honest, if we all looked the same our world would be pretty boring. I want you to know there is always someone you can reach out to if you. YOU ARE NOT ALONE.