University of Memphis alumni, Jayde Darnell, not only had to endure the typical struggles of a normal college student, but a rare disorder as well.
Darnell has a disorder called ectodermal dysplasia, which is a combination of several syndromes that can affect your teeth, hair, nails, and skin.
“It is a congenital birth defect,” Tina Haymond, Darnell ’s mother, said. “Her father and I carry the silent gene and didn't know it. Jayde hit the lottery in a bad way. Her type is called hypohydrotic ectodermal dysplasia. She is a highly affected female. She has a lack of sweat glands, sparse deformed hair, lack of toenails, and fingernails. Most of all she has missing, and deformed teeth. As well as under-developed bone in the mouth and jaw line.”
Haymond knew that something was wrong with her daughter the moment she was born.
“She was born with not a stitch of hair anywhere,” Haymond said. “I bothered every doctor in town, and was dismissed. A year later when her two teeth came in, they were grossly deformed. A dentist saw them and immediately sent me to a dental specialist in Paducah, Kentucky. That person set me up with a genetic specialist and he diagnosed her.”
Darnell has undergone numerous prostheses since she was young.
“I was born with disfigured teeth as a child and received my first dental prosthetic at the age of two,” Darnell, said. “ As I grew older, so did the need for larger and more adult-looking prosthetics.”
At 21 it became an urgent situation because of bone deterioration and lack of developed bone.
She had 3 surgeries over a year and an half. The first was extensive grafting and sinus lift. The second was grafting again. The third was grafting and extensive implants. All surgeries were done while Darnell was awake, because of issues with insurance.
“Insurance is a joke, Haymond said. “They said it was cosmetic. We appealed. They denied. I've always paid out of pocket and eventually raised the money myself for her last three surgeries. I raised $ 25,000 and numerous things were donated. Including the surgeons time and fees and the implants. A total of about $30,000 was donated in medical and implants.”
Darnell’s disorder was a heavily guarded secret until 3 years ago. Despite constantly getting asked questions about her because of her hair deformation. However, Darnell ’s mother refused to let her daughter’s disorder define her.
“I put Jayde in counseling at a very early age, and she continued all through college,” said Haymond. “I knew that I would need help from people who had wisdom. I didn't want self-esteem issues to become her truth. People can be very cruel. I also got her involved with Target House at St. Jude so that she would stay grounded. She had to know that her medical issues were workable. Even though we weren't making light of it by any means, there were others out there with unworkable problems. It kept things in perspective.”
Despite her hardships, according to friends Darnell has managed to maintain a pleasant demeanor.
“I would be glad to call her my daughter anytime,” Stanly Cooper, a friend of the family, said. “She is very outgoing, in fact if you did not know (when you met her) then you would not know that she had or has problems. She is vivacious, extremely courteous, and talks very intelligently. Which I expect nothing less from a Memphis graduate.”
Darnell also has advice for others who are going through times of struggle.
“Surround yourself with people who can offer you support and wisdom,” Darnell said. “Such things are irreplaceable. Seek guidance from those who can offer it and pay no attention to ignorance. In my experience, people are going to disappoint but recognize that it is only their lack of knowledge that makes them not understand. Take pride and appreciate the things you have and be slow to judge those who struggle as well.”
