Date: 10/25/2021

Q: I went to therapy for the first time the other day to help with anxiety and other things. After asking me to describe Ichthyosis my therapist said that he thinks that I’m always on higher alert than most because the nerves in my skin are more sensitive. Totally makes sense. I’ve always had a fear of falling and getting hurt. I subconsciously am constantly thinking about other reaction. I’m way more jumpy than I think is normal. So, in addition to mental health issues due to social anxiety and the things that go with ichthyosis. He thinks there may be a physical reason for being more anxious. What do you think? Her therapists have always said the same thing and we agree

A:

• I absolutely agree with this. My son is definitely hypersensitive through skin too.
• Do you think this sensitivity can be related to any type of ichthyosis or more specific for some type? Still possible in a 3 year old? I’m new to ichthyosis so this type of information is really helpful.
• I think this is an individual thing. I too have EI and in terms of sensitivity it tears easily and I'm sensitive to heat. Really cold weather makes my son dry out more but the tearing of the skin I hardly notice anymore. It's been that way for years and years, but as for anxiety or anything else like that that's more of a psychological thing and I don't struggle with more than normal nerve sensitivity due to my skin. I have Fibromyalgia and nerve damage but again it has nothing to do with my skin specifically.     
• Yes, my skin is sensitive, but I know I heal quickly, so I don't really have a fear of pain or getting hurt. To me, my skin sensitivity to heat/cold, certain fabrics, chaffing, etc. is just how my life is.
• My hypervigilance is more around how others might react to my appearance. I mentally prepare myself for people and am on high alert for any words, phrases, and nonverbal cues that I might perceive as rudeness regarding my skin. I rarely leave the house without makeup on, and I am always sure I'm appropriately dressed. I even had to change out of my pajamas and into leggings and a tunic before I would let my husband take me to the ER when I was having trouble breathing after surgery!
• I used to struggle with anxious feelings because of my skin as a kid but I also grew up without my left leg so I always had people starting at me. However, as an adult I no longer care what others think. It's been that way for years. In fact, even as a teenager I would wear bikinis.
• When you say things that go with Ichthyosis what specifically are you referring to?
• I totally agree as I'm really bad with my nerves too. I have EI and like you I'm constantly wary of hurting myself. I personally think I have nerve damage due to the fact most of the blisters I now get are increasingly much more painful than they once were. I tend to feel them more if that makes sense? It's really difficult to explain to be honest xx.
• Thank you for sharing this here and to all of you who have provided your personal input.
• We have been engaged in FIRST committee work with others to heighten focus on issues like yours. We hope to generate programming to meet our community's needs surrounding the mental well-being among affected individuals and their families. Your shared thoughts point to this ongoing need. I appreciate the motivation! ?
• Pain and itch nerve receptors are really the same so it makes sense. I see it in my oldest too. Thanks for talking about this. I’m sure it’s something that effects many people with ichthyosis ??
• Interesting! I definitely think your therapist is on to something...totally agree!
• My son has ichthyosis, and I have my own rare condition (Ehlers Danlos Syndrome, a connective-tissue disorder). We both suffer from anxiety. Mine is most definitely caused from my health condition. I am always on edge because I feel like I'm going to fall, feel unstable, bruise incredibly easily, dislocate my joints just by barely moving -- lots of physical implications. I'm cautious about things that I'm not even aware I'm being cautious about, just because it's been my life for so long. So, I can completely see my son or anyone else with ichthyosis doing the same sorts of things.
• Wow this is insightful and totally makes sense! Thank you for being vulnerable enough to share! ??
• That makes sense to me. Thanks for sharing.
• My daughter’s physical therapist mentioned that and it makes a lot of sense to me.