I recently came across the In My Skin event focusing on the African American community and their experiences of ichthyosis. This event was hosted by the Foundation for Ichthyosis & Related Skin Types organization (FIRST) on Friday, August 14. FIRST is a global organization that seeks to find cures and build conversations about Ichthyosis. The FIRST organization is a leader in Ichthyosis research and support.
What is ichthyosis?
The FIRST organization defines ichthyosis as, “a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin.” The causes of ichthyosis are rare but the importance of skin is significant. The organization explains that, “skin is the primary deflector for the human body.” In other words, having layers of skin protects us from the harsh realities of our external environment.(FIRST – Foundation for Ichthyosis & Related Skin Types, Inc.2010)
When my partner and I saw the In My Skin event on Facebook, we were elated and grateful to have the opportunity to hear these voices. Advocating for differences and capitalizing on art and music as a means to connect people is beautiful. While reflecting on my partners experience of ichthyosis we decided to participate in the In My Skin event. We submitted a video of us discussing how our family adjusted to icthyosis and things we do to feel comfortable and safe within our skin.
Intentional Simplicity has been working to increase wellness and healing within the BIPOC community. We take pride in building black legacies. As a member of the BIPOC community, I have experience being treated poorly and judged due to the color of my skin. Throughout my journey, I have learned that whether it is my skin, my hair, or the language I use, people will always have their own perception of who I am. Unfortunately, my experiences of discrimination and prejudice have influenced how I see myself and how I move through the world. As I gained confidence in my in my skin, I also recognized ways in which I could feel grounded and safe. My friends and family see my pain and courage as their battle too. They have helped me feel empowered to stand, speak, and grow in my skin.
As an ally of the ichthyosis community, I support my partner as ichthyosis is apart of her identity. I aim to increase awareness, overall wellbeing, and celebrate the journey of discovery for families like mine. My family and I recognize that sadness and moments of isolation are inevitable. With this, we spend time reflecting on how these jarring experience have impacted us positively, neutrally , or negatively. We also explore which emotions are ours to hold. Sometimes our environment can influence how we are feeling and it may not be an accurate portrayal of our needs. The aim is to recognize how to grow in the most uncertain and unexpected moments. Give yourself grace and kindness at each step, after all we are only human!
Congratulations to the In My Skin artist and speakers, and much gratitude goes to the FIRST organization for acknowledging differences and supporting us in the conversation of change, acceptance, and growth.
For more information about FIRST and Ichthyosis please visit, http://www.firstskinfoundation.org or click the link below.
With Intention, Sarafina