I enjoy getting and reading the FIRST e-Newsletter each month.  It’s been along time since I was a FIRST board member ('09-'12) and engaged in FIRST. 

My two affected girls are now 20 and 17.  Both participated in sports, marching band and theatre.  Cora is a sophomore in college and works in a group home with adults with disabilities.  She obtained her CNA license while in high school and is studying nursing.  Selia is a senior and will be attending Purdue next year.  She is busy with band, theater, National Honor Society, and hanging out with her boyfriend.  I was always  worried that they would never be “normal” or be able to do things.  They proved me wrong and have not let their condition deter them from anything.  We are very proud of the young women they have become.  We appreciated being involved with FIRST.  We were provided with great information to help navigate through their disorder.  Much continued success for your organization.

• Read about Cora and Selia from their childhood.

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.