FIRST & Foremost | Maureen Neville
November 6, 2014
When someone discovers that I am the Communications Director for the Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST), typically I am greeted with the same three questions: “What is ichthyosis?”, “Is someone in your family affected?” and…“What brought you to FIRST?”
From a clinical perspective, I may respond by saying, “Ichthyosis is a family of genetic skin diseases characterized by dry, scaling skin that may be thickened or very thin, and most forms of the disorder are very rare. Each year, more than 16,000 babies are born with some form of ichthyosis and it affects people of all ages, races, and gender. Because ichthyosis is rare, many affected individuals never have the opportunity to meet or share with others, or have access to knowledgeable physicians. Often times, feelings of being alone, frustration and vulnerability can become overwhelming. In addition to the numerous medical complications like dehydration, infections, chronic blistering, and overheating, patients with ichthyosis are subjected to psychological issues. Patients are often ostracized and concerns of loneliness, low self-esteem, and depression are common due to the appearance of their visible, chronically shedding skin.”
And, no, before working for FIRST, I did not know anyone on a personal level , affected with ichthyosis.
However, there is more to the story – much more. So what is ichthyosis? It is a genetic skin disorder, yes, but since I began my position with FIRST in April of 2013, it has also been the catalyst that has lead me on a worldwide journey of meeting the bravest and most inspirational people of my life. So I ask you to join me in my journey, to follow this blog series, and to discover a world of advocates and champions like no other. You can expect interviews from the advocates at FIRST, those who work tirelessly to ensure that each affected individual has access and support to the larger ichthyosis community. I’ll be bringing you first-person member stories including affected individuals of all ages, parents, siblings, friends and all who have been touched with this disorder. You’ll explore the day-to-day challenges, hardships and triumphs, right along with them. You’ll even get a behind the scenes look at some of the most brilliant medical minds in the world—physician-scientists who have dedicated their lives to find better treatments and an eventual cure.
This blog will, in brief, be a symbol of hope and a beacon of courage. It will reveal the same hope that is the driving force behind the mission of FIRST – to educate, inspire, and connect all those affected by ichthyosis. It is hope that inspires this 33 year-old organization, that has impacted so many lives, to be the leading global authority dedicated to assisting families affected by ichthyosis, the only patient advocacy organization funding medical research specifically targeted toward finding advanced treatment as well as a cure, and an organization that has funded 13 projects granting over $1.6 million in research since 2006.
So please join me as I introduce one of the most unique communities, and by far, one of the most dedicated and inspirational groups of individuals in the field of rare disease.
Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST)
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