My father was born 54 years ago and was the first in our family to have Ichthyosis a unique genetic skin disorder. When I came into the world 26 years later, I possessed it as well. It was reassuring to have a father who comprehended my situation, even though I resided with my mom, seven hours distant. He understood it in ways that others did not.
Having a noticeable difference while growing up was challenging. Children can be quite harsh. I recall getting pelted with stones during recess and being kicked in gym class. A kid tormented me so much that he ended up getting suspended.
However, the instance that resonated with me the most occurred on the school bus during 9th grade. A boy mocked me by altering the lyrics of a Mystikal song to “take a bath, wash yourself,” since I was frequently known as “the smelly kid.” The creams we apply to our skin have a distinct fragrance, and the children exploited that to tease me.
Even when I encountered my future husband, I constantly fretted about whether I had an unpleasant odor. I was reserved and rarely spoke about my situation. Whenever individuals inquired if I was sunburned which they frequently did I would respond briefly and change the subject. I had some experiences dating in high school, but I never thought anyone would want to marry me, much less have children with me.
In my final year, I received a friend request on MySpace from a guy who believed my skin was red due to my love for the outdoors. He eventually confessed that he was unaware it was a medical issue. I felt anxious about holding his hand due to how different my skin seemed. The initial phase of our relationship was difficult. My doubts caused conflicts, yet he continually comforted me. Even after 11 years, he still looks at me and says, “You look gorgeous, now let’s hurry we’re running late!”
We got engaged only three months after we started dating me at 18, him at 19 and moved in together a couple of weeks after that. We got married in 2011 when he had a brief pause from military duty.
We frequently discussed the possibility of having children. Although Ichthyosis with confetti is a dominant trait (implying a 50% likelihood of transmission), we never thought about adoption or genetic counseling. We were assured that if our child had it, we would understand how to nurture them and guide them in loving themselves.
In January 2014, we discovered that I was expecting. I selected a high-risk physician just in case. The pregnancy progressed without issues, although my skin deteriorated during the third trimester I experienced heat rash and extremely dry skin, losing so much that I needed to sweep every day.
Due to her role and the possibility that she might have Ichthyosis, we arranged for a C-section.
On September 22, 2014, we went to the hospital while it was raining. The anesthesiologist informed me that he would have to take off a layer of skin from my back prior to administering the spinal block to prevent infection. That’s when we were overcome by fear. I was in such a state of panic that when my husband was eventually allowed into the operating room, they instructed him to help soothe me.
Once she was born, I inquired if she had the condition. He mentioned that he didn’t believe that was the case. The doctor indicated that it could take several hours to confirm. Yet when I finally embraced her, I instinctively realized she lacked it. We called her Sadie.
As she matured, I found it difficult to match her passion for nature. My body doesn’t perspire effectively, which causes me to become heated quickly. Organizing activities during hot days was challenging, but we managed to solve it.
Two and a half years later, I became pregnant again. This time, I desired ample protein and intuitively sensed I was expecting a boy and that he would possess Ichthyosis. I had one kid without it, so I believed my fortune had ended.
An ultrasound revealed his hand curled into a fist, and I instinctively understood. I wished I was mistaken, yet deep inside, I really wasn’t. I was fine with him having the condition, but guilt began to surface. Had I made his life more difficult by sharing this?
When Jackson was born, all went smoothly, except he required warming lamps following each feeding. A challenging moment occurred when a section of skin detached from his heel and bled heavily. While my husband and cousin applied lotion to calm him, he yelled, and I sat in tears, feeling guilty. However, after it ended and I embraced him, I experienced tranquility. We called him Jackson.
Seeing Jackson develop provided me with strength. I began observing negativity within the Ichthyosis community—individuals behaving like victims. However, I wished for something different for him and other children. His arrival inspired me to reveal our story.
I aimed for new parents who felt scared and uncertain to discover hope when they searched “Ichthyosis” online. I hoped they would understand their child could have a joyful and fulfilling life just like ours. I aimed to share the teachings of three generations and remind them: hope is always present.
