About Me

Greetings, I am glad you found my blog and hope you can find something useful if you are dealing with Ichthyosis whether it is yourself or for a loved one.  I used to have a similar blog but let it go for so long that it was time to start fresh.

About me:  I am 51 years old, and a father of four great kids, and I work in the Insurance industry as a database administrator and a big data engineer.  I have Lamellar Ichthyosis, along with my sister.  I am a member of the FIRST Regional Support Network and reside in Des Moines, Iowa.  The Foundation for Ichthyosis & Related Skin Types (www.firstskinfoundation.org) is an excellent organization that helps families all over the United States.

I was also a long-term participant in a study at the National Institutes of Health in Bethesda Maryland.  Thanks to my mother who wrote Senator John Glenn of Ohio in the 1970s.

I try not to limit myself because of Ichthyosis.  I live a very normal life with my family and love to ride my bike, work on the house and

After a long hiatus, I am restarting this blog.  I hope everyone is safe and healthy.  It is Memorial Day weekend and people are starting to emerge from isolation albeit in a limited fashion.  I am continuing social distancing but trying to get outside more.  Yesterday, I went on a bike ride on the Des Moines trail system and everyone was keeping distance well.

  Here is a picture of my bike on one of the paved trails in Des Moines.  

As it's getting warmer, heat is always a concern when you have Ichthyosis and I am not immune to overheating despite taking Aictretenoin (Soriatane).  When I ride I bring plenty of water and try to avoid trails that have too much direct sunlight.     

If anyone is still subscribed, I'd love yo hear from you and maybe give some suggestions on topics to write about.  If you or someone you love has Ichythyosis, what are some of the things you struggle with?

I would love to hear from anyone in the mid-west.