Nicole M. - Philadelphia, PA - 2008
Ichthyosis Through the Decades - 30's
Nicole -- Age: 33 Philadelphia, PA
What type of ichthyosis are you affected with? lamellar ichthyosis
What treatments do you use for your ichthyosis? I use the following creams/ointments, soaps in various rotations throughout the year: Eucerin, Vaseline (Lavender/Baby scented---any store brand will do), Shea butter, All Natural African Black Soap (found in most herbal shops), Dove Body Wash, Neutrogena soap (dry skin), Cetaphil Gentle Skin Cleanser, St Ives Apricot Scrub, Extra Strength PDS Cream (by Neostrata), and Tazorac cream .1%.
How have these treatments changed over your lifetime, and has your ichthyosis itself changed? As a child and through high school/college I only used Eucerin cream. As I've gotten older, I've noticed that my skin has gotten drier and is more susceptible to changes in the environment (heat, cold, humidity, hard water, etc.) In my twenties, I started to experiment with various acidic lotions (lactic, glycolic, salicylic) to assist with exfoliation. Also, I can no longer use Eucerin by itself. I am always mixing it with other creams to help me stay moisturized during the day.
Tell us about the challenges you face, at this decade of your life dealing with ichthyosis. My job keeps me pretty busy and I am very socially active in the evenings and weekends. I am always on the go and the biggest challenge for me is finding and/or making the time to actually take care of my skin properly. In college, I learned the art of the 30-45 minute "prep and go" (Shower/Lotion/Dress). Although I am quite skilled and use it as part of my daily routine to get ready for work, it does not always bode well for my skin. I take longer showers on the weekends, as well as incorporate exfoliation and body scrubs. However, I would love to slow down enough to include long luxurious baths and soaking my feet as part of my weekly routine.
What seems important now that that you are older compared with what seemed important when you were younger? When I was younger, my total focus was on my skin and making it look as good as possible so that I would not be teased or look different. Now my focus is on more than just skin and I don't mind being and looking different. When I turned 30 I dyed my hair light brown and last year I dyed it light blond. In summer I wear bold beautiful colors; the brighter the better. Ichthyosis is only one part of me and it is important to me that I improve myself physically, mentally, spiritually, and financially as well. I try to surround myself with positive people to form healthy relationships and positive colors to improve my mood.
If you knew "then" what you know "now" what would you do different? I was a very shy kid and I definitely wish that I would have been more social and outgoing. I used to try to blend in and not draw attention to myself. After college, I worked several years in retail and that forced me to interact more with people. I have learned that a friendly smile and hello can work wonders in starting a friendship. If I could do it again, I would smile more and frown less.
What hopes do you have for the future, taking your condition into consideration? I hope to stay as healthy and as limber as possible. I would like to be able to do my own bathing and skin routine as long as possible without outside assistance. When I am 93, I hope to still be able to put lotion on my back and on my feet. (I see yoga in my future!)
What advice would you have for others affected? "We can and will become what we aspire to be" -Tracy Chapman. Connect with others who have ichthyosis through FIRST, e-mail, calls, or the AAD skin camps (Camp Horizon/Discovery). My ichthyosis friends have taught me so much about life and have given me inspiration to get through the rough times. I have learned that having ichthyosis does not have to limit me. At times I still wonder what my life would be like without this condition. However, I do know that I would not have met the truly beautiful people that I have been fortunate to meet in my lifes journey. I am now 33 with a zest for life and a lot of living to do. I am not afraid when people ask me about my skin. I am willing to educate them about ichthyosis and do it with a smile. I may even bring it up before they do. People ask me, "How come you are so happy?" I tell them that a frown will only bring more frowns and negative energy; I've had enough of negative thoughts to last a lifetime. I smile because I am happy with myself. Surround yourself with positive energy, and know that life can be what you make it if you change your attitude, and create a supportive environment for yourself.
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.