A Chicago man has opened up about his rare genetic condition of otofacial syndrome (Source: HJ Mark Ellison/Twitter)Born with a rare congenital disorder called Otofocial syndrome Chicago resident Joseph Williams does not have a jaw. Despite undergoing numerous surgeries, experts have not been able to construct a jaw as his “body rejected it”, according to various reports.
Due to the condition, he is unable to speak or eat using his mouth. He uses sign language to communicate, and eats through a tube.
Sharing his life experiences with Caters News Agency, William revealed how people treat him differently due to his medical condition, reported New York Post. But he always kept his spirits high by telling himself that “there is a reason that God made me like this”.
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The 41-year-old also opened up about finding love in his wife Vania who he met in 2019, as he said: “We were friends at first, but we eventually started dating and fell in love. We got married in 2020. I’m sure people would never have expected me to get married. To be honest, I didn’t think I would either.”
Here’s all you need to know about the medical condition.
What is it?
According to rarediseases.org, it is a condition in which a child is without a mandible, and, consequently, without a chin.
“This disorder affects the development of one’s mouth, and is present at birth itself. The symptoms can persist and worsen as one ages,” said Dr ChandraVeer Singh, consultant otorhinolaryngologist, and Head and Neck Onco Surgeon, Wockhardt Hospitals Mira Road.
Causes
This condition happens due to a mutated gene, said Dr Singh.
Joseph Williams, 41, from Chicago, was born with an extraordinarily rare condition called otofacial facial syndrome which left him without a jaw. The welder said people have run away from him in fear but he hasn’t let his condition hold him back from anything in life. pic.twitter.com/YA2WlGA7V0
— HJ (Hank) Ellison (@hjtherealj) May 20, 2022
“In a person with this condition, the tongue will be underdeveloped, making swallowing impossible. Survival becomes challenging, too. It can take a toll on one’s physical and mental well-being. One will have to use sign language or write notes to communicate. Those with this condition require life-long tubal feeding,” said Dr Singh.
Treatment
Treatment can include reconstructive surgery for facial clefts, removal of extra teeth, surgery to repair fused fingers or digit anomalies. It can also include treatment of renal disease including hemodialysis/peritoneal dialysis or a kidney transplant, explained Dr Shishir Aggarwal, senior consultant, plastic surgery at Sri Balaji Action Medical Institute.
“Management of seizures, if present, and evaluations for learning disabilities may be required based on the type of the syndrome. Speech therapy and special education also recommended. Other treatment is supportive and based on symptoms,” said Dr Aggarwal.
Agreed Dr Singh and added that people with this syndrome need to be monitored closely. “The treatment for this syndrome will be surgery. So, one will have to follow the guidelines given by the doctor.”
Dr Anshuman Kumar, director, Surgical Oncology, Dharamshila Narayana Superspeciality Hospital advised genetic counselling for patients and their families as well to know more about the actual condition.
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