Date: 10/29/2020

We have heard from FIRST Adults with ichthyosis and related skin types, in past meetings, emails and conferences, in surveys and phone calls, that they have some advice for our younger members and their families. They are always excited to share what they have learned over the years.

When we recently asked (in FIRST’s private Facebook groups for Adults and for Women) “What do you wish you had known about ichthyosis when you were younger? What skin care routines do you swear by? Do you have advice on ears, scalp or feet?” they jumped at the chance to pass along their wisdom.

We would like to thank everyone for their insight. Since there are over 25 types of ichthyosis and knowing that each person (even with the same type) responds differently, as always please seek the advice of a physician before trying something new. We know this is just the tip of the iceberg in terms of advice, but we plan to continue to share these insights ongoing.

Please send additional tips and comments to Chris at cwassel@firstskinfoundation.org. Thank you!

Glori

Those little tins of balm (Vaseline, Bath & Body, Burt's Bees, etc) should be everywhere-In your car, bedside drawer, purse/briefcase, everywhere! You never know when they will save you when your face is peeling, your lips are dry, your cuticles are a wreck or you are just chafing somewhere.

Samiha

1. apply glycerin just after shower when the skin is wet & then apply your favorite lotion/Vaseline on top of that glycerin in the bathroom. Because when you get out of the bathroom, your skin gets dry.

2. I have ichthyosis vulgaris so I use Pulse Powder on alternate days which works as a soap substitute

3. I comb my hair when it is soaked with shampoo to remove scales.

4. Natural loofah is my favorite to remove scales.

Andrea

I have found Avon Foot Works Cracked Heal cream works great! It has 4% Lidocain and lanolin It works so well on cracked areas. I buy mine in bulk on eBay once a month. I also love the new Treat Large Lip Balms. They are expensive but they work so well around my eyes and cracks in my knuckles and of course lips. There is a nice new salve called Vitamin E salve with aloe at only $7 a jar. It lasts a long time. I have just started using it instead of bacitracin under my bandages and on my ears.

Erin

Using a small fish scoop (like for aquariums) to skim top of bath water makes cleaning the tub MUCH easier, and keeps your drain from getting stopped up! 

     Andrea Yes, my mom used a plastic strainer.

Lisa

The bottoms of my feet crack and because I am on my feet a lot they hurt and are slow to heal. It only took me 40+ years to figure this out. I put A LOT of Neosporin on a large Band-Aid. I pad it with another large Band-Aid before wrapping my foot in the Coban Wrap. If I leave it alone for 2-3 days it is almost healed when I take it off.

     Eve try urea cream. Keeps feet supple so they don't crack.

Christina

This would have been so helpful. I wish I had access to information about managing skin. because it would have helped me immensely. What I never had so many years ago., I am learning now.

Ann

I wish I'd started going to an ENT (Ear, Nose and Throat doctor) much sooner to manage the skin flakes in my ears. Since discovering this, I go every 5 to 6 months and it is the best 5 minutes.

Gretchen

I wish I would have known about vegetable glycerin. Glycerin has really changed my life and my skin. It would have made such a difference in high school. Don't buy cheap Chapstick, it just dries your lips out more. Flexitol Heel Balm for heels. Cerave SA for all over. Buy a cheap foot spa tub then use a professional callous remover treatment on heels. Korean exfoliating back cloths for those hard to reach areas.

If you haven’t already requested to join FIRST’s private Facebook groups, please do for some wonderful support and great information. Just search on "FIRST Ichthyosis" within Facebook and request the groups that pertain to you.