 |
Stephanie TurnerA 23-year-old American woman with harlequin ichthyosis.
Country:
 USA |
Content:
- Biography of Stephanie Turner
- Overcoming Challenges
- Living with Harlequin Ichthyosis
- Defying Expectations
- Becoming a Mother
- Miraculous Pregnancy
- Embracing Motherhood
- Understanding Harlequin Ichthyosis
Biography of Stephanie Turner
Stephanie Turner, a 23-year-old American woman, is living with harlequin ichthyosis, a rare genetic disorder that causes her skin to grow seven times faster than normal. Born with this extremely rare genetic condition, Stephanie's skin is red, inflamed, and covered in severe cracks. Doctors warned her mother, Donna, that Stephanie would unlikely survive for more than a few days. However, today, Stephanie Turner is considered a long-lived individual among others in the United States who have experienced the consequences of harlequin ichthyosis.
Overcoming Challenges
Despite her condition, Stephanie Turner summoned the courage to become a mother. She stated that life with ichthyosis was not easy, and she endured years of hurtful remarks about her appearance. Often, people would approach her and ask if she had been burned in a fire. Stephanie's skin is extremely sensitive to microbes that normally would be blocked by the skin's protective barrier. Despite her adversity, Turner found joy in becoming a mother, even with the most severe and uncontrollable form of ichthyosis. After giving birth to her first child, now two years old, she became the first person to experience the joy of motherhood with this severe form of ichthyosis.
Living with Harlequin Ichthyosis
Residing in Wynne, Arkansas, Stephanie Turner's skin is hard, highly stretchable, and prone to cracking. She cannot even grow hair on her head, as her ears and eyelids literally peel away. Stephanie is highly susceptible to bacterial infections that can easily penetrate her skin due to its compromised protective layer. Despite her challenging circumstances, Turner remains positive and accepts the constant pain and discomfort. She stated, "I know what it's like to have the skin I have now. I was born with it. I don't know what I would look like if I were different."
Defying Expectations
Stephanie Turner's longevity can partly be attributed to her use of creams that prevent bacteria from taking hold of her body. Even today, she continues to moisturize her rough skin and limited mobility limbs with creams. "I always spend about 15 minutes applying lotion because my skin is so tight and non-elastic," she said.
Becoming a Mother
Stephanie Turner's internal qualities helped her win the heart of Curtis, who eventually proposed to her. Shortly after a whirlwind romance, the couple got married. Curtis stated, "When I met her, I didn't see someone with a skin condition. I saw a beautiful woman. She was so funny, always trying to look at things positively." Soon after their wedding, Stephanie became pregnant with their first child, Willie. Being pregnant with harlequin ichthyosis was unprecedented and a cause for concern. Stephanie worried about the stretching of her skin on her abdomen, and even doctors could not provide guidance as she was the first patient with ichthyosis to give birth.
Miraculous Pregnancy
Contrary to all fears and expectations, pregnancy had a positive effect on Stephanie's skin. In due time, she gave birth to her firstborn, Willie. Now, the couple is raising their two-year-old son and four-month-old daughter, Olivia. As both parents must carry the defective gene for the child to inherit harlequin ichthyosis, their healthy son and daughter were spared from their mother's condition.
Embracing Motherhood
Stephanie Turner expressed, "I can't express how wonderful it feels to know that your children are healthy and happy." She hopes that the future will bring nothing but happiness, acknowledging that there may be challenges along the way. She is currently focused on her two beautiful children and her amazing husband, Curtis. Curtis stated, "Stephanie is a supermom. She can do 50 different things at once, and she still has time to smile and care for both children."
Understanding Harlequin Ichthyosis
Harlequin ichthyosis is an extremely rare disorder of keratinization. The parents of an affected child are carriers of the pathological gene. The risk of having a child with harlequin ichthyosis is one in four. Individuals with this condition have skin that grows seven times faster than normal, resulting in severe skin tightening and numerous thick scales, resembling the armor or costume of a harlequin. The skin splits into several areas, causing deep cracks. The affected person's face appears stretched, with turned-out lips and eyelids, while the ears, hands, and feet can be completely covered in scales. Constantly expanding skin must be removed and moisturized four to five times a day. In order for a child with harlequin ichthyosis to survive, intensive skin care and the use of retinoids are necessary. Many individuals require physical therapy and counseling.
