Date: 02/14/2025

Recently we posed a question to FIRST members and they responded with heartfelt answers.

What do you wish that others would understand about ichthyosis?

• Ichthyosis makes me more sensitive to cold weather
• Sometimes my skin just hurts badly. Like being an un-oiled tin man and any movement or touch is excruciating. It's exhausting.
• I know exactly how you feel because my legs and everywhere else but especially my legs so dry and red and yes people may not understand but yes, it's actual pain!
• There isn’t anything we can’t do. Don’t think you can’t do something (ie sports, jobs, vacations) just because you have ichthyosis. You may have to take extra precaution, but you can do it.
• We deserve love and care like people with no chronic skin condition.
• First, that's it's not contagious. With misinformation rampant, my skin disorder has become suspect - in restaurants, public rest rooms, nail salons, etc. This is a relatively new experience. I'm a senior citizen, and I recall these sorts of scenes happening in my youth, but not once I became a teenager or adult. Suddenly, they're back. The public needs to know I am not contagious. Second, I wish more basic dermatologists were more familiar with Ichthyosis. I have recently experienced some changes with my skin and two of the doctors in my network are stumped. (yes, I know FIRST keeps a list of more experienced MD's and am currently wrestling with my insurance network) Third, I wish families would be more sensitive to the psychological component of this disorder. Teasing and bullying is only one element to be considered. Parental guilt and familial shame can often affect the situation as well.
• That we have dreams and goals like everyone else and should be treated equally when it comes to making tough decisions. Discrimination should not be tolerated, no matter what condition you have.
• People often speak over me or make assumptions about what I want or need. I wish they would take the time to listen and understand my experiences and know that it hurts to be excluded from social interactions and conversations.
• I am very fortunate to have loving family and great friends that understand me but when I’m in social situations with strangers it becomes awkward at times.
• That we can’t always be ready at a moment’s notice!
• Skin care routines are not a choice for us - they are our lifelines.
• That even though it may seem we handle it well, it's still an unpredictable, complicated, tough life to live.
• I wish more doctors understood Ichthyosis and were more willing to work with other specialists.
• I have many feelings and thoughts on this but one I’m dealing with currently is getting social security to understand ichthyosis is in fact a disability and it’s lifelong. It doesn’t go away and there’s no cure.
• That they don't have to pity us. We can live very full and joy-filled lives. We don't need to be pitied.
• That even though I can do things doesn’t mean I won’t be in pain later. That I have absolutely no control over the severe peeling my skin does.
• Some people like to take pictures AND they know we look different. I would like that they ask first.
• I would like the doctor and people at FIRST to take us more into account specially if we are over 60. If they could also give us more alternatives in their research.
• That being unable to tolerate heat is a real problem, and it can sneak up on a person.
• That it’s not contagious.
• I've been in that situation before and it's tough. I wish people would just try to understand and be more supportive. How do you deal with people that judge your child even when you explain it to them?