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, products or items presented 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.
An organization in Texas with the mission to encourage and unite children and their famiies affected by skin disease and birthmarks by providing opportunities for social, emotional and spiritual support.
FIRST member, Courtney Westlake explores what her family has discovered in raising a child with physical differences and what she has learned about true beauty. Through her personal insights and experiences, Courtney shares how we can all learn to find and celebrate God’s version of beautiful in our lives, especially within our differences and struggles
Through the Coalition of Skin Diseases, we have learned of a book that might be helpful to children. The book is Different Just Like Me and it was written by Lori Mitchell, whose daughter has vitiligo.
There is no mention of vitiligo in the book, only meeting people who are different than the main character, April. The story is told from the point of view of a little girl anticipating a visit to her grandmother's house. Each day that she is waiting for the trip, the little girl encounters someone who is different, someone who is either older, speaks another language, has a disability, or is of a different race, But, in each situation, that person is doing the same thing that April is. The book is available on Amazon and most likely also at your local library.
FIRST Medical & Scientific Advisory Board members Drs. Mary Williams and Peter Elias have embarked on a project to write a book for the general public about the skin and its most critical function, the permeability barrier. They have also developed a website: www.eliasandwilliams.com, that provides reliable, scientific information on the skin, its permeability barrier and its disorders.
FIRST is very excited to announce that Medical & Scientific Advisory Board members Drs. Peter Elias and Mary Williams, along with Debra Crumrine and Dr. Matthias Schmuth, have published a book on ichthyosis titled ICHTHYOSES Clinical, Biochemical, Pathogenic and Diagnostic Assessment. The authors hope that the book will prove to be a useful resource for families who would like to learn more about their condition. It will also be a useful tool for the staff at FIRST and is available on amazon.com for purchase. Throughout their careers, Peter and Mary have been tireless advocates for patients with ichthyosis. FIRST is very grateful for their efforts on behalf of those affected with ichthyosis.
We have all experienced itch, whether from insect bites or dry skin, but millions of people worldwide have chronic or even intractable itch. Just like chronic pain, chronic itch interferes with a person's ability to function - and even affects quality of life. Living with Itch offers relief, drawing on the authors' vast knowledge of itch, the suffering it causes, and available treatments.
No Such Thing As Normal
Written and published by an individual affected with ichthyosis
The American Academy of Dermatology's (AAD) Camp Discovery program is for children ages 8-16 who have a chronic skin disease.
Under the expert care of dermatologists and nurses, Camp Discovery gives campers the opportunity to spend a week with other young people with skin conditions having fun and participating in activities such as swimming, horseback riding, arts and crafts and many more.
Camp Wonder is a FREE summer camp for children with any skin disorder, ages 6 - 16. Each year, children with chronic and life-threatening skin disorders from around the country take a break from being a patient for a week and focus on just being a kid. Camp Wonder is a special place free of judgement and stares! We create an environment of acceptance and support to empower the children to be themselves
A free, lifetime pass, plus a $10 handling fee. - available to U.S. citizens or permanent residents of the United States that have been medically determined to have a permanent disability (does not have to be a 100% disability) - that provides admittance to more than 2,000 recreation sites managed by five Federal agencies.
Information about this program is available here.
Center for Disabilities & Development
100 Hawkins Dr. #S295
Iowa City, IA 52242-1011
FIRST Facebook Groups
Thanks to the generosity of the Shahnaz Kraybill family and their family and friends, (Aliya, affected with ichthyosis, her sister, Diya, and their parents Durreen and Robert), FIRST has established the Diya & Aliya's Friends (DAF) Fund to help alleviate some of the financial burden that may be facing families with affected children.
Financial Aid for Rare Disease
Information about financial aid for rare diseases is available on the NIH website via this link.
PO Box 1067
Lansdale, PA 19446
PO Box 1067
Lansdale, PA 19446
930 E. Woodfield Road
Schaumburg, IL 60173
Toll Free: 866-503-SKIN (7546)
AAD Washington, DC Office
1445 New York, Ave., NW. Suite 800
Washington, D.C. 20005-2134
555 East Wells Street
Milwaukee, WI 53202
4301 Connecticut Avenue, NW, Suite 404
Washington, DC 20008-2369
4301 Connecticut Avenue, NW Suite 404
Washington, DC 20008-2304
Helpline Only: 800-336-GENE
28 Argonaut, Suite 150
Aliso Viejo, CA 92656
Phone: 949-248-RARE (7273)
P.O. Box 8923
New Fairfield, CT 06812-8923
A website that provides resources to help people make informed decisions about purchasing health insurance in the marketplace.
Information Clearinghouse National Institutes of Health
1 AMS Circle
Bethesda, Maryland 20892-3675
P.O. Box 8923
New Fairfield, CT 06812-8923
NORD's Rare Caregiver Respite Program
Pachyonychia Congenita Project
2386 East Heritage Way, Suite B
Salt Lake City, UT 84109
International collaborative project that enables health care professionals, parents, and patients to access high quality dermatology images
DermWeb is owned & operated by:
The Department of Dermatology and Skin Science - University of British Columbia
835 West 10th Avenue
Canada V5Z 4E8
Gene Therapy Basics
American Society of Gene & Cell Therapy provides information about the basics of gene therapy, via this link.
Visit Global Genes for information about navigating health insurance.
FIRST has partnered with NeedyMeds whose mission statement is to educate and empower those seeking affordable healthcare by providing information on healthcare programs, offering direct assistance and facilitating programs.
NeedyMeds is a national non-profit organization that maintains a website of free information on programs that help people who can't afford medications and healthcare costs. More than 1.3 million patients, family members, healthcare professionals, social workers and patient advocates use the NeedyMeds website each year. They update data on over 9,000 assistance programs, 15,000 free/low-cost/sliding scale clinics and nearly 1,500 drug discount coupons. All their information is accessible online, https://www.needymeds.org/ at no charge and without registration. For specific ichthyosis information, please click here.