You are here
Home > All Trending Articles > My Grandson Was Born with Ichthyosis…

My Grandson Was Born with Ichthyosis…

ichthyosis skin disorder

50Plus-Today is more like a curated resource for adults age 50+ than a blog, and we are supported partially by our readers. When you buy via the links on our site, including amazon.com, we may earn an affiliate commission. We do not accept incentives for our reviews; all opinions are our own.

by Leslie Farin

originally posted May 4, 2018 | updated October 10, 2020

Update from October 10, 2020

Adam, now 18, graduated from high school with honors and now attends Georgia State and Savannah College of Art and Design (SCAD). He continues to live his life without allowing his Ichthyosis to define him. 

Adam’s family, always supportive, remains active with FIRST. In fact, Matt, Adams brother, a recent Syracuse University graduate, plans to work with Dr. Roop in his lab at the University of Colorado in Denver for a few months before he attends the Case Western Reserve University Anesthesiologist Assistant program. Dr. Roop’s lab is the only research facility in the world that uses laboratory mice to research ichthyosis. 

Original post from May 4, 2018

An ichthyosis skin disorder is relatively rare, but generally presents at birth and can be quite severe. 

We want to thank Mike Briggs for his work with FIRST (Foundation for Ichthyosis & Related Skin Types). Mike’s grandson, Adam, was born 16 years ago with ichthyosis.  With little known about the condition, doctor’s were unsure how to treat it. Adam’s skin looked almost like wax paper and the medical community did not know what it was it or if he would survive. Adam’s parents, Mark and Kelly, educated themselves and found FIRST, a very small grass-roots effort that provided good information. Unfortunately FIRST but did not have funds to conduct research for a cure. They became very active, and, along with Mike, worked tirelessly to help grow the organization.

At this writing, FIRST is now the world’s leading patient advocacy organization dedicated to improving lives and seeking cures for those affected by ichthyosis.  Seventeen research studies were completed thus far, due in large part to the fundraising efforts of Mike’s family.

Adam, is very much a typical teenage kid who participates actively in school and activities. 

He particularly enjoys photography, video games and hanging out with friends. Adam does not allow his disability to define him, but he must deal with the reality that his body makes too much skin, particularly on his hands, feet and elbows, then sheds it off.  The extra skin makes it difficult to walk, which makes it difficult to change classes in school. It is difficult to sit on a hard wood seat for extended periods of time.  With no pores due to the disease, Adam experiences great discomfort in both hot and cold weather.

Management of his condition involves an hour of self-care daily.

This is alot to ask of a busy sixteen year old. Adam traveled several times in past years to Denver with his parents and grandparents to participate in exciting stem-cell research conducted by Dr. Dennis Roop at the University of Colorado. A cure does not yet exist for Adam, but they made progress toward this goal and FIRST funded research continues.

Most people are not familiar with ichthyosis until they or someone they know are personally affected, as was the case with Adam’s family.

FIRST is an outstanding organization that provides support, education, community and hope to families about ichthyosis. The organization offers an extensive website, national conferences, patient support forums, FIRST to know calls, ongoing research and more.

Mark and Kelly remain passionately involved through fundraising and communication with newly afflicted families. Mike served on the board for a 10 year term and brought Larry Silverman from SLA Group, LLC, into the fold to serve as treasurer a few years ago. Larry, thrilled to be a part of this amazing organization, enjoys what he gives back to the community with his donations of time and financial expertise.

Check out the FIRST website for more information: http://www.firstskinfoundation.org,

 

source: a version of this post first appeared in sladvisorygroup.com. Reprinted with permission.

 

We'd love to hear from you!

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Top