Date: 06/08/2021

Q: So, I’m mattress shopping and looking for brands that are odor resistant and A: ones to avoid because of that potential issue

A: We use zip up mattress covers to protect mattresses from everything, even liquid and bed bugs etc. It probably works for odors too.

  • I use mattress protectors too because I have to use so much emollient so I should look in to some!
  • What brand of mattress protectors have you both used? So that they don’t make the plastic noise when you roll around?
  • I live in Ireland and I got mine in IKEA. Mine don’t make any noise at all.

Q: My 15 year old with CIE is going to go with us in a few weeks for a three hour paddle excursion in the afternoon. He is extremely heat intolerant, but loves being active. I value adult perspectives above all else and want to make sure we are thinking of everything.  He is so excited! So far we have:

- phase change vest with extra packs in a cooler backpack

-Frog Togg bandana

-wide brim hat, rash guard

-plenty of water

-keep him wet (he seems to be able to handle the heat if we can keep him wet)

-cycling gloves to prevent blisters if needed

It will likely be in the 90s in the full sun.  He will be on his own kayak. 

Would having him peel ahead with Tazorac of time help?  We have never seen a sign of sweating even with a peel.  I’d love any other insights you have for us.  We appreciate it!

A: I am not too sure about the peel thing, makes skin more susceptible to sun damage (just my opinion).

  • The best tip I have is UV sleeves that are designed to not only protect arms from sun, but wick sweat away from skin. The trick is to wet the sleeves before you put them on, then wet them whenever they dry. It is like having air-conditioning on your arms constantly and enables you to handle heat much better.I say go for it, be careful and have fun!
  • That’s what he wore on his last paddle with Boy Scouts- I’ll have him pack that. Thanks!
  • The cool vest with back-ups would be a good idea. Have an exit strategy in case it gets to be too much.
  • We can carry our cell phone and call emergency if needed or we can switch out with someone in a double kayak where he doesn’t have to paddle if needed.Can you think of any other exit strategies?
  • Just someone on call to go and get him if necessary. Umbrellas are always nice to sit under too if the sun is too much and bags of ice with a cool washcloth.
  • Definitely peel beforehand, but then you have to be careful with sunburn. I have one of the around the neck fans and I LOVE it!!!
  • Do you think maybe a week ahead of time put it on? He usually peels for a few days after application. I agree we will have to be really careful about burning.
  • Yeah, I would do about a week ahead then stop. So that way it’s not brand new skin but a thinner layer. Make sense? I plan my peels all the time. I don’t like peeling constantly, so I plan my peels. Lol.
  • I like to use the water to your advantage and to cool off.
  • That makes sense to me! He’s done all day canoe trips in 80 degree weather and keeping him wet was key.
  • When I go on my trips the water is my favorite place.
  • Not sure what he uses for sunscreen, but I love the stick, I have one with me all the time. When I know I’m going to be out or around water I do a layer of the cream, and re-apply stick throughout the day.
  • That would be really portable!
  • He loves the beach and always feels his best there.
  • Yes, and less messy. I’ve used it for years. And it’s sort of hydrating.
  • I used in the stick in Belize and I was the only one not sunburned after our long snorkels.
  • I have CIE & I've done an all-day paddle on the river in my kayak. Looks like you have everything covered. It's a lot cooler on the water. It was a 100+ degree sunny day when we went out. I did fine until we got off the river! I would dangle my hands and feet in the water, and splash myself every once in a while.
  • One thing I did that I was EXTREMELY grateful for: I put my jar of Vanicream/Glycerin mix in a baggie and stored it on my kayak. It was very much needed when I broadsided a rock and fell into the river! I can handle not needing to lotion up after a few splashes, but a whole-body dunk is another story!
  • That’s a really good point! It’s fine as long as he’s wet, but it is painful if he dries out without reapplying.
  • So glad to hear you’ve been there done that. We sure would like him to try and see how he does than limit him.
  • Noxema takes the red and the sting out and moisturizes.
  • We are over the top careful. Almost always we avoid the sun 12-4. We wear a lot of spf clothing/hats/good sunscreen. My sister is a redhead and my dad had skin cancers removed in his 30s, so careful is a way of life. This is a rarity.
  • Yeah I have CIE en confetti and we used to live in Boston and the heat was unbearable at times for sure! I’ve had squamous cell carcinomas removed more times than I can count now, so when it comes to heat I become a hermit lol. Good luck to him in the canoe though! Sounds fun.
  • I've had CIE and I am 52 and so far I don't notice any issues but I'm always expecting because I had so many severe burns as a child. What should I be looking for?
  • For me mine popped up when my skin was under stress or my body under stress from infection or injury, my lumps were very itchy, though apparently squamous carcinomas aren’t supposed to be itchy. For months the doctors thought they were bug bites until I lost it and demanded a biopsy.
  • Regulate his body temperature by allowing him to put his feet in arms in water occasionally.
  • There isn't much else to do extended exposure to heat is going to heat him up That's just the way that it is. Even if you try to cool him eventually he will internally heat up
  • What skin care topicals does he use? Make sure they are safe with sun exposure. Other than that, make he has water all around he can splash on him. Also suggest a big cotton hat for sun.
  • I can't speak on CIE experiences but I can say that when we go to the lakes, I check the DNR website for the water quality first. We've learned not to go to the lakes when the levels read remotely near the higher safety range, which is typically after heavy rainfall here and the hotter days. My son is very sensitive to the e coli bacteria and his symptoms are anywhere from skin issues to nausea/vomiting.
  • A Tazorac peel may help but will also make him very tender and susceptible to blistering and possible sun burning. 90 degree full sun is brutal even for me and I can easily sweat. Keeping him wet, especially his head, will help tremendously but will also make his skin eventually soften up and become fragile so he'll have to be careful of the areas that are going to be moving and rubbing together or against objects so they also don't blister or tear. I think it is doable but your biggest concern imo is going to be blistering and raw spots from water saturation combined with the movement. If that makes sense.
  • ALWAYS GO FOR IT. You (and he) are already way more prepped than I would be now at 36 years old. I was too self-conscious to use some of those things and they would have helped a ton. I use Tazorac. Heavy on the sunscreen.
  • I have CIE and I can tell you heat, humidity and exertion isn’t a pleasant experience! However, people’s ability my vary. ??
  • Stay HYDRATED with water or drink lots a few days before if he doesnt want to drink during trip to limit bathroom breaks.
  • Sunburns are horribly painful. Try to prevent that.
  • I don’t kayak, but is it possible for him to frequently take his shirt off to soak in water and put it back on wet?

Q: Can someone with ichthyosis get a tattoo? What is your advice?

A: I have EI and I have now gotten 3 tattoos. My last one was 2 weeks ago. I have one on my chest, one on my back(shoulder) and most recent my forearm. I do some prep before. Debris and moisturize the area leading up to tattoo day. I use the Aquaphor ointment pretty much constantly before and after.

  • Wow! Those look great! Do you have KRT10? Are you on any meds or do you have a mild case? Your skin looks great!! Better than ours and we take Acitretin! I’ll show my son - he is so determined to get one - I love yours!! Especially that butterfly/cross one - sooo cool!!!
  • I'm wanting a little wrist tattoo with my fiance, and I've been wondering about my skin and how it will handle a tattoo. I have EI. Your skin looks amazing.
  • I have KRT10. I take Sorriatane. I will say, I am just peeling from the meds and the one i just got dulled up a bit. My artist researched our skin and he always does touch ups. I’ll get this one touched up in a few weeks, when I get my next one. LOL.
  • I have lamellar and have a few, this one is about 12 years old and is probably due for a touch up in color.
  • I had one and it pretty much fell off ??
  • May i ask if the tattoo artist had to change the needle s out a lot ???
  • None of the artists that I used had to change needles.
  • Did you have to do anything to prepare your skin?
  • No i didn’t do anything to prep my skin and all 4 of mine were done on the fly. 3 were even done in different states... so, I didn't have time to plan them.
  • I have 8 tats and never had any issues healing. But my peeling is on my lower extremity and ears and arms.



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