Ashley R. - Lewistown, PA - 2021
Pick a point in your life and write about your challenges or successes.
As a child with ichthyosis my parents, although amazing advocates for my needs, were unaware of many of the resources that I could have qualified for, simply because of the rarity of the condition. In the academic setting, we had multiple Individual Education Planning (IEP) meetings, which helped to ensure that my academic needs were met. However, we did not know that I would have qualified for a case manager to sit in on those meetings to advocate within the interdisciplinary team. When I started doing Case Management for children and their families, I had the tools to access the various resources that people with ichthyosis would qualify for. Such as, how to talk to a health care professional about getting appropriate insurance coverage for medically necessary-yet often considered cosmetic-lotions or how to apply for Medicaid. Social Work has allowed me to learn about these different, helpful resources that otherwise I would not know were available in my small, rural town and apply my experience and research to diverse populations.
The process of explaining ichthyosis started to be exhausting; I truly felt like no one would ever understand. The condition has impacted my self-identity in addition to complicating many facets of life. There are many different barriers that I had to go through to ensure I would be successful in pursuing my dream to attend college. Practical realities which most young college students do not have to consider such as walking to class in the summer, ensuring adequate air conditioning, and where I was going to shower to ensure my skin had enough moisture were large barriers for me. The idea of college seemed encompassed with anxiety and fear of the unknown. I dreaded what the process would be and feared I would not be able to further my education. I started advocating for myself. From there, a fire sparked within me and I realized I needed to help others in similar ways that I have been helped. Social Work involves so many aspects of everyone’s lives and I wanted to help in all areas, not just one. I attended Lock Haven University and obtained my Bachelor of Science in Social Work in 2017. I then attended graduate school at the University of Pennsylvania’s School of Social Policy and Practice, where I obtained my Master’s in Social Work in 2019. That was the start of my career. I have been told by many that I am empathetic, loving, and caring. My parents tell me that this is because of everything that I have been through due to others’ judgements of my condition. Likely, I have honed the unique ability to connect to others in ways that many cannot because of my experience with Ichthyosis. The truth is that many people do not know about ichthyosis and only hear about it once they have met me through school or work. I slowly became the voice in the room that always talked about advocacy as it relates to disabilities. For so long, I would hide away and refuse to make eye contact with others if I thought they were looking at my skin. Now, I state it from the start. There is nothing wrong with telling someone “I just want to let you know now that I have ichthyosis and that is why my skin looks a little different.” Once I started doing this, I was surprised at how drastically my interactions with others changed. I am now the one that walks into the room smiling at everyone and informing them of something they may know little about. Throughout my life and experience with ichthyosis, I had to be open. Through my growth within the Social Work academics and profession, I learned to never hide myself or my skin due to worry of what others may think. Social Work has allowed me to see the various strengths within myself and others that I may not have noticed before. Ichthyosis has taught me to be strong, resilient, empathetic, and to never give up on my dreams. I am uniquely beautiful, and so are you.
How has FIRST impacted your life?
FIRST has helped me in many ways. First and foremost, it was the reason that I was able to connect with others with ichthyosis. Being told constantly by others that I was different was challenging. However, when I received the FIRST newsletter, I always felt like I fit in at least one place. At least someone else knew what I was going through. FIRST also helped my parents discover various lotions that helped my skin and connected me with specialists that helped me greatly throughout my life. I always look forward to reaching out to others with ichthyosis through Instagram, and look forward to attending FIRST National Conferences in the future.
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals 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.