Treating a child with severe genetic skin disorder
Dermatologist’s care helps child walk again.
Jennie Riley's story
My daughter Anna was born six weeks early. We didn’t know anything was wrong while I was in labor, but once she was born doctors were immediately concerned by the appearance of her skin. She was diagnosed with harlequin ichthyosis, a severe genetic skin disorder. Infants with this condition are born prematurely with very hard, thick skin covering most of their bodies and are at high risk of infections.
I connected with Dr. Craiglow on social media when Anna was 21 months old. Anna’s excess skin impacts her whole body: building up in her ears; impeding the formation of her eyelids, affecting her vision; limiting motion in her fingers and toes; affecting her ability to walk, requiring her to use a wheelchair; and putting her at a high risk for infection. Because her entire body is affected, Dr. Craiglow regularly communicates and collaborates with Anna’s other physicians.
Harlequin ichthyosis is extremely rare and there is no cure. Treatment typically centers around bathing and moisturizing. But given the severity of the disease, Dr. Craiglow has worked to explore other options that might be more effective. We recently have had success with a medicine that modifies the immune system’s activities. This medication has reduced Anna’s redness and inflammation and, to our immense joy, helped her walk again.
Dr. Craiglow feels more like a friend than a doctor. She responds day or night as issues arise and goes above and beyond what I’m used to from healthcare providers. Anna is taking her first ballet class, a significant milestone that we likely wouldn’t have reached without Dr. Craiglow’s expertise and dedication. Harlequin ichthyosis is a lifelong disease, and we are so grateful to have Dr. Craiglow to help us give Anna the best quality of life possible.
A dermatologist's perspective
“Rare and severe diseases can have a debilitating effect on a person’s quality of life—especially when there is no cure or established treatment. I’m determined to find more effective therapies for harlequin ichthyosis so Anna and other patients like her can have an improved quality of life. Until then, I will continue collaborating with colleagues in other specialties to ensure Anna is as healthy and happy as possible and celebrate the little wins along the way.”
─ Britt Craiglow, MD, FAAD
Patient & physician stories
Learn how board-certified dermatologists have helped patients with serious skin disease and collaborated with other doctors to enhance patient care.Browse all stories