Calvin is a teenager with ARCI-lamellar ichthyosis. He submitted this essay to convince his community (JMS) to donate money from a basketball fundraiser to FIRST.

Imagine waking up every day to a body that feels like it’s covered in scales. Even the simplest touch or movement could be painful, while also having to take half an hour out of the day to constantly moisturize one’s skin. But for some people diagnosed with ichthyosis, this is their reality. However, one organization helps fight the battle for those affected and that is the Foundation for Ichthyosis and Related Skin Types. Our school community must donate the money raised from the Student-Faculty Basketball Game to the Foundation for Ichthyosis and Related Skin Types for its efforts to improve the lives of people affected by ichthyosis and to find cures for ichthyosis.

The Foundation for  Ichthyosis and Related Skin Types(FIRST) works to improve the lives of people affected by ichthyosis. Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. There are many different forms of the disorder including ichthyosis vulgaris which is the most common form which is mild dry skin that affects one in every two hundred fifty people. There are also more severe and rarer types of ichthyosis including ARCI-lamellar ichthyosis which affects about 1 in 100,000 (“Genetics”). As of right now, a cure has not been found for ichthyosis but  FIRST is working to change that.

One way FIRST improves people’s lives is by holding biennial national conferences in rotating locations. At these conferences, guest speakers discuss their experiences and ways to combat ichthyosis. Many people say that these conferences are the first time they have seen someone with the same skin as them. One of these instances is a girl named Sarah who said “The first time I saw another person with skin that looked like mine was at my first FIRST National Conference in Chicago as a full grown and married adult. I cannot describe the feeling that washed over me and then stayed for the whole weekend – and beyond. I hadn’t even realized how alone I had felt, even surrounded by those who love me. FIRST gave me that and, ever since, I’ve tried to give back and be that person for someone else. FIRST improved this person’s life and countless others because they went to the conference and did not feel as alone.

Another way that FIRST improves affected people’s lives is by providing lots of information about ichthyosis and ways to treat it. It has many recommendations on its website about lotions to treat dry skin and ways to cool off in hot weather as people affected with ichthyosis cannot sweat, like in Tools and Tips for Living with Ichthyosis. Some may say that FIRST does not address every challenge that people affected with ichthyosis may face, however, FIRST’s work is still incredibly valuable. It provides useful resources and information, support networks for parents of affected children, and reduces the stigma surrounding ichthyosis. While FIRST does not address every issue that arises, affected individuals are thankful for all the organization does.

In addition to improving the lives of affected individuals, the Foundation for Ichthyosis and Related Skin Types works to find cures for ichthyosis. FIRST established a research grant program that funds research projects to collect more information on ichthyosis. These scientists work to understand the genetic mutations that cause ichthyosis and find out how the disease disrupts normal skin production. This is crucial because it may lead to a more precise treatment to combat the underlying causes rather than just relieving symptoms. Another way that FIRST is finding cures is by co-sponsoring a database with Yale University that collects information from affected individuals. FIRST oversees that the registry is managed and utilized to its fullest capabilities by providing resources and anything else the Registry would need. The purpose of the registry is to make sure that every type of ichthyosis is found and diagnosed and to find the causes and treatments of the different classifications of the disease.

A Pittsburgh family had an affected child and they said that “The doctors didn’t know what he had and we were very scared,” They also said “When he was about 6 months we went to Yale,” and that “The registry was able to tell us the specific type of genetic mutation he had and give us an exact diagnosis.” This illustrates the crucial role that FIRST plays in finding cures for ichthyosis. Families will know their loved one’s condition and also bring them hope, as well as offering families answers and a path to better treatments and cures. While it may be argued that there has not been a definitive cure for ichthyosis, it is important to recognize the significant contributions that FIRST has made. FIRST has been instrumental in funding research that has led to a better understanding of the genetic mutations that cause the rare disease. While a complete cure is still out of reach, the research that first is doing is constantly evolving and new breakthroughs are being made all the time, paving the way for a cure in the near future. 

If no one makes improvements to treatments for ichthyosis, affected people will continue suffering from the effects of the condition. However, the Foundation for Ichthyosis and Related Skin Types works to improve the lives and find cures for affected individuals. Even though not many people are affected by ichthyosis, FIRST is able to provide more direct attention because there are less affected individuals.This is why the our school community must help the Foundation for Ichthyosis and Related Skin Types continue its amazing work by contributing the money earned from the Student-Faculty Basketball Game to this worthy organization.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments listed 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.