Hi everyone! 🙂 I am new to this blogging thing, but I decided to start one because I have been asked a few times how I take care of my Ichthyosis and thought it might be helpful to write a blog about my journey pertaining specifically to how Ichthyosis affects my life and just life in general. I am going to preface this by saying everyone is different and everyone has their own, unique routine that works for them and I do not expect anyone to do what I do. I just thought it would be helpful for some people.
For starters, I was born with ARCI or Lamellar Ichthyosis. I have a mild-moderate case of the condition and basically my main symptoms are the shedding of the extra skin cells, itching, dryness, and mild ectropian of my eyelids. I also cannot sweat as well as most people can, so I have trouble with the heat but that is easily remedied by staying in the shade or just being very cognizant of how my body is feeling so I know when to find a way to cool off to avoid heatstroke. To make myself comfortable and presentable to the world (by my standards, not those of society) I have a routine I do each day with certain products and a mindset that allows me to achieve this level of comfort in my daily life.
Every morning in the shower I scrub with a luffa or what I call a “puff.” They sell these at most stores that sell bathing products and are very colorful. I try to get one that is more on the coarse side so it promotes more exfoliation of my skin. I try to use body washes that will help with this process as well like Tone’s “Fruit Peel” or anything with salt in it. Most of the time I just get regular, nice-smelling body wash. Everyone is different but as far as my scalp goes, I don’t do anything special for it for fear of losing my hair so I just use Herbal Essences ultra-moisturizing conditioner to keep my hair softer (my coarser hair is due to the Ichthyosis but also in part to the fact that I have thick, curly hair- Thank you Viking ancestors for that!). After I shower and dry off, I lotion up first with Creamy Vaseline as my base moisturizer then I supplement it with St Ives 24-Hour moisture and Neostrata’s Problem Dry Skin Formula (my Dad orders this online for me, I am so grateful for his help!). Throughout the day I carry Creamy Vaseline and another moisturizer in my backpack or purse, which I use whenever I feel I need it. Another product line I absolutely LOVE is from Lush. I use their “Sympathy for the Skin” lotion every day and I swear by it because it doesn’t burn even the most raw spots of my skin where I have peeled it and every other lotion burns the crap out of it. I occasionally also give my face that extra moisture it needs with their face mask “Oatifix” followed by Sympathy for the Skin. Before I forget, I also highly recommend using their bath soap bar “Buffy” in the shower for those areas where dead skin cell build-up is more severe.
At night to make my eyes feel more comfortable I use Genteal Night time ointment and I make a line of it just on my lower lid and I gently use my finger to smear it between my eyelids so my eyes stay moisturized as I sleep. Sometimes I will wear an eye-mask to seal it in more, but most nights I don’t. The ectropian hasn’t gone away, but it definitely has improved! Another thing that helps is if I apply some of the Neostrata around my eyes (not too close or else it will burn). In general if my skin is burning, the Sympathy for the Skin helps a ton too!
Some days my skin is super dry and it sheds more and I need to do my routine twice a day and others it is clearer and more manageable. I have learned in my 23 years on Earth that you just have to take it one day at a time and don’t let self-consciousness keep you from potentially going out and having a spectacular day because as the saying goes, “those who mind don’t matter and those who don’t mind do.”