Arie P. - Fruitvale, BC - 2021
Lamellar ichthyosis is a rare genetic condition that affects the skin
My name is Arie. I am 29 years old, and this is my story of life with ARCI-lamellar ichthyosis. Growing up with ichthyosis created a ton of challenges in life and still do today. As a kid growing up, I don’t think I fully understood my skin condition until my teenage years. My parents did all the talking, describing to people what I have and what not. We would make annual trips to Vancouver Children’s Hospital to see my dermatologist for check ups and to gather new information on ways to help deal with my skin condition. Making friends was never an issue for me as a child and some of my best friendships were made when I was 4-5 years old. Growing up I attended numerous hockey camps over the summer months crossing paths with a ton of people unaware of my skin condition. As a kid it was tough to have those conversations and more times than not my parents had to do the talking for me. I have always said this, I don’t mind the general curiosity people have with it, especially since I can almost guarantee I am the only person they’ll meet that has this condition and I am more than happy to talk about it. It’s the tone or way they ask it that can bug me.
My teenage years were probably the toughest years. I started to fully understand my skin condition and come to terms with it. Going into high school was particularly tough with the wide age group of kids in school. Those were the years where I would hear the worst comments from random kids that didn’t know me. This skin condition was not easy and people that did not know me would make some rude comments such as ‘orange peel’ or ‘When are you going to take that mask off?’ not fully understanding what I was going through. I wish some people could walk in my shoes for a day and try to live the life that I LIVE. Even though this condition is light skin, I’d like to think I am ‘thick skinned’ with how to handle comments like that. Once I turned 16, I went on a drug called Soriatane that cleared up my skin a lot. It has made life a little easier. Ever since I was four years old, I’ve played hockey and soccer competitively and eventually playing junior hockey between the age of 16-20 years old. Those summers I spent working at Okanagan Hockey School in Penticton BC. Hockey has always been my biggest passion and created so many opportunities for myself through the connections I made.
My adult years have gone pretty well. Post junior hockey I was fortunate enough to go to college and obtain a Business Administration General Management Degree and play college hockey. I have changed up the dosage of my medication a couple times since the start and finally have found a dosage that I feel comfortable with. To this day I wake up every morning and wonder how my skin is going to look for that day or how I can make it look good in public. I also fear that someone will bring it up when I cross paths with them. I won’t lie, there has been many times where I’ve broken down to comments from people. To this day I still have emotional moments by myself where I’ll break down wishing I had normal skin. I have been very fortunate to surround myself with great people and friends that treat me ‘normal’ like I do not have a skin condition at all.
I have some influential people that have helped me in tough moments of my life. Obviously my parents have been there since day one and have always supported me emotionally and financially. There is a cost with this skin condition whether it’s ordering different creams for me to use or paying for my pills. My Junior Hockey coach, Terry Jones, has always been someone that I have tremendous respect for and has helped me in so many ways. Playing Junior Hockey and playing against teams that don’t know me I would hear some pretty nasty comments on the ice and a couple times during intermissions I would break down. Terry helped me get through those tough times and I will forever be grateful for what he has done for me over the years. He is a great friend of mine. The other friend that I’ll never forget is Tyler Collins. Tyler lived up the street from me growing up and we have been good friends for as long as I can remember. We went to school together and played hockey together from 4 years old until 19. Tyler always had my back when kids would make rude comments about my skin whether it was as little kids or in junior hockey. Even though we only cross paths once a year or so these days I will always consider him one of my best friends for what he has done for me growing up and feeling ‘normal’.
I am a very goal-oriented person and work as hard as I can at everything I do to obtain that goal. I currently work as Hockey Operations Advisor for the Red Deer Rebels of the Western Hockey League and eventually want to work for an NHL team. Anyone that knows me knows that has always been my goal. I have never been healthier and keep surrounding myself with good people. I am very happy that FIRST has an Ichthyosis Awareness Month #IAM21 and I hope I can be apart of something special here with spreading awareness and educating people on this condition.
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.