Date: 11/23/2021

Q: What is one thing you wish you knew about ichthyosis from the very beginning?

A:

• I wish I knew earlier that I can maintain it holistically, and be happy like I now know.
• How toxic the sun can be!
• That there are others out there like me.
• Come to terms of why me and accept myself.
• Wish my parents were able to tell people "It's not contagious"
• not a disease someone will catch from playing with you. ?? ??
• Yes, we hear this often!
• I wish my parents weren't informed the falsehood that this will go away
• The gynecologist at the time told my parents same.
• At age 30+ now I have found ways to manage (psychological, creams, clothing, life-saving hacks for me) and live with it.
• Thanks to Foundation for Ichthyosis & Related Skin Types, Inc. For sharing informative blogs post and stories of others living and thriving with similar skin conditions
• That this isn't affected by my diet, that I really don't have much control over it, and that no, it won't get better as I get older.
• That just because I was born with it didn’t mean future children would be born with the same issue. I have two older sisters who do not have it.
• I wish someone had told me that it’s not just your skin you have to consider but your eyes as well. I felt a bit unprepared when my eyesight started deteriorating.
• I wish that my parents had been told what it really was, not that it was just extreme dry skin, that the dermatologist had not given the advice to only bathe me once a week, and that Vaseline was the only effective thing to use. By high school, I had discovered for myself that more frequent, long soaks helped more, as well as lotion that had AHA worked well.
• I’d say the doctors don’t always know what’s best for you. Sadly, I’ve never been given time or advice by any doctor for my skin that was helpful. And this includes dermatologists. If you do find a doctor who cares and takes time with you.
• I’ve always lived in a rural area medically underserved. My mom was told she and I had the worst dry skin the doctor ever saw. ????‍??at age 50 I was diagnosed by a podiatrist. He gave me LacHydrin lotion. Learned nothing else until I found this group. So much makes sense. I feel like “not a weirdo”for first time.