Christine B. - Albuquerque, NM - 2022
I Knew, Yet I Didn't Know - My Journey With Ichthyosis Vulgaris
At the FIRST’s National Conference in San Diego, my doubts increased, but my determination to discover why my skin differed from most other people's skin remained strong.
I was born with persistent red skin, jet-black hair, and my eyes were a coal color (later to fade to hazel). Family members teased my mother about having a papoose (this was in the 60s), and relatives pinched my chubby cheeks until I cried from the pain and swelling. I believe this teasing and meanness from the family set the stage for my mother's neglect of my skin and other conditions I had. She never acknowledged anything wrong with me and dismissed my concerns.
When I was four, our family moved from Long Island, New York, to Albuquerque, New Mexico. During the autumn and winter months, I had scaly lower legs and arms, which caused bullies to call me "chicken legs" when I had to wear dresses to school. My hands were always dry, too dry to hold onto the metal climbing bars at recess. I would watch the other girls climbing the bars and doing flips that I could not do. My lips are perpetually dry and cracked, and my upper lip always has a thick scale in the middle. I was constantly chewing on my lip to pull off that scale, only for it to re-grow. My fingers would crack and gape open, bleeding all over. My fingers cracked down the middle of the fingertips, the sides of the thumbs, and where the fingers bend. The school nurse would wrap my fingers with Q-tips and medical tape to keep me from moving them in hopes they would heal, but I would remove the bandaging before I got home so I wouldn't get in trouble. She would keep trying.
I have too many lines in the palms of my hands; when a teenager in our neighborhood was reading children's palms, she freaked out when she looked at mine and made me show the other children how weird my hands were. I am lucky that my left hand has two letter-M's that mirror each other in the middle of the palm because the teenager told the other children the two M's meant that I would be rich. They believed her.
When I complained about my skin, my mother answered that I was not drinking enough water or taking care of my skin and was lazy and dirty. My mother rarely touched me; she never put lotion on me or did anything about my skin except scold me. She also grew impatient with my hair, which would snarl up into giant "rats' nests" that she could not comb out. She made me get a pixie cut, and I was the only girl with short hair. One Christmas, my stocking held a giant bottle of Vaseline lotion. A very early memory was taking a jar of baby cream and rubbing the cream on my legs. I remember admiring how pink and normal my legs looked at that moment. Mother never took me to a dermatologist, and our family doctor never noticed my skin. My skin flakes left white dust all over my room; it was noticeable on my vinyl records, dark wood desk, and black desk chair. Paradoxically, when I began puberty, I developed cystic acne and a very oily scalp and face along with scales while the rest of my body was dry. My skin scales would show through the sheer stockings we wore back then, and my rough skin snagged my stockings. It felt unfair that I couldn't make my skin look as normal as my friends' skin no matter what I tried. I didn't date, didn't attend prom, and missed a lot.
I graduated high school and applied for military enlistment in the Army. I was fortunate that my skin was in a mild remission when I enlisted as I was anxious to leave home. I was fortunate to serve in humid climates until Desert Storm. After Desert Storm, I went to college and went on dates but was always afraid and embarrassed about men seeing my skin condition. I knew my skin wasn't normal; I was different and had more than "dry skin." I was afraid that if I had children, they would be born with the same skin, and I did not want them to have what I hated about myself. I made a choice not to have children. Despite believing I had more than just dry skin, doctors in the military and other places could not tell me what was wrong. And the fact that my skin went into remission in the warmer months made it appear that I had winter dermatitis. It was an ophthalmologist who opened my eyes as to what I had.
My optometrist referred me to an ophthalmologist for a suspected case of glaucoma. While I was speaking with the doctor, he noticed dry, flaky skin on my eyelashes, and then he took my hand and looked at it. "Oh, that is so cool! Hyperlinear palms like my sister!" he exclaimed. I didn't know what he meant. "My sister has a genetic skin disorder called ichthyosis," he answered, "and one indication of ichthyosis is extra lines in the palms. Have you ever asked anyone about it?" I told him that doctors said that I just had dry skin in winter over the years. But the ophthalmologist thought I should speak with someone about it and referred me to a dermatologist who specialized in genetic disorders.
The dermatologist told me that if I did have ichthyosis, I had a very mild case, and hyper linear palms don't always mean that ichthyosis is present. He conceded that I had atopic dermatitis and gave me a tentative diagnosis of ichthyosis but said a genetic test would prove whether or not I had it. I imagined that a genetic test would be too expensive, but I researched ichthyosis and found The Foundation for Ichthyosis and Related Skin Types, Inc. The FIRST conference in San Diego was close enough to Albuquerque to allow me to sign up and attend. I might meet someone who understood my condition!
When I arrived in San Diego, I felt ashamed that I had made such a fuss over my skin all my life because of the other types of ichthyoses that members had. Members had very severe cases of ichthyosis and had been through much more than I had, except that they had loving and supportive families. I almost left the conference early, except I met a young couple who looked normal, but the husband had ichthyosis. Similar to me, the husband knew something wasn't right, but it was challenging to prove until his genetic test confirmed his ichthyosis. While I was at the conference, I dealt with a lot of personal anger and turmoil inside. I felt anger at my mother for not taking care of me and neglecting my skin problems, anger at all the teasing and bullying I went through, and anger at the limitations it created in my life. I received a genetic test at the conference, courtesy of Yale University School of Dermatology, even though they too appeared to have doubts about my story and skin.
The result from Yale confirmed my lifelong belief that my skin condition was not my childhood negligence or anything I could control. I felt vindicated but also angry at what I had lost and missed. I was enrolled at the VA and wanted to see the dermatologist there for my ichthyosis care. However, when I showed her the result from Yale, she said that a genetic test from Yale was not real because it was for research purposes only. She insisted that I did not have ichthyosis because my skin did not look like the images of ichthyosis patients on Google! Once again, despite the evidence, I was told that there was nothing wrong with me; I was being dramatic, was discredited, and disrespected. I decided to undergo genetic testing with GeneDX, a medical laboratory, and received certified medical proof that I have ichthyosis vulgaris and atopic dermatitis. After I knew for sure, I made peace with myself.
I discovered after my genetic results that my journey was less about my skin - though that was important - and more about being heard, understood, and accepted by my family. Sadly, my family did not care. My skin came between my mother and me, my family and me, and the society around me. But I also used my condition to come between me and myself. Nowadays, I accept the state of my skin and accept myself. I will never feel the need to question my experiences and the validity of those experiences ever again. I moved on to new endeavors and a new life.
It is sad that not every family is loving and accepting of a member who is different, and children can develop lifelong mental and emotional problems when they know they are not accepted. But there is hope and help available, once a person knows what they have, and where to look. I want to be a part of the solution, and look forward to helping others.
I am completing two graduate degrees - an MSW and an MBA and should graduate this May. I want to work with patients and families dealing with ichthyosis and other genetic disorders, patients at risk of family neglect, abuse, abandonment, and overwhelmed families. A child born with a genetic disorder might bring feelings of guilt and shame into a family that does not understand what has occurred. And there might not be a physical cure for a genetic disorder, creating additional stress for patients and families. I want to help develop a network of mental health resources across the nation to support members of FIRST, and other organizations that support persons and families who have genetic disorders. I hope to bring awareness to patients and families dealing with ichthyosis and other genetic disorders that mental and emotional care is as vital as physical care.
FIRST - Foundation for Ichthyosis and Related Skin Types, Inc. (2022) What is Ichthyosis? Retrieved from What is Ichthyosis? | Foundation for Ichthyosis & Related Skin Types (FIRST) (firstskinfoundation.org)
GeneDX (2022) Clinical Genomics, Genetic Testing, Rapid Results. Retrieved from GeneDx | Clinical Genomics | Genetic Testing | Rapid Results | GeneDx
Yale School of Medicine (2022) Keith Choate, MD, Ph.D., Associate Dean for Physician-Scientist Development and Professor of Dermatology, Pathology, and Genetics; Director of Research, Dermatology. Retrieved from Keith Choate, MD, Ph.D. Yale School of Medicine
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.