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Prosthodontics/Ectodermal Dysplasia

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Question
Hello, my name is Cayla, I'm 16 and I live in Upstate, NY. About a year ago I was diagnosed with Ectodermal Dysplasia by a dentist at Aspen dental. I've had problems with my teeth since I was born, (I was born with no enamel on my baby teeth) we were told that it would be rare for it to affect my adult teeth, but it has. My teeth are rotting from the inside out, have little to no enamel, are extremely fragile, and most are either broken down to the gum line or badly chipped/broken. I'm writing you in hopes that you may be able to point my mom and I in the right direction for treatment. We have Medicaid/HMO blue for insurance and I'm on SSDI (For mental health) so we're having trouble finding someone who will take our insurance to extract all my teeth and put in implants. Aspen only accepts private insurance, so in order for us to have them do it, we'd need about $16,000-$18,000 and well, we just don't have that. It's getting harder day by day to eat, drink, and sometimes talk. Do you know of anyone in New York who would take my insurance, and who could help. I'll need someone experienced in Ectodermal Dysplasia who can perform the operations I need. Any help/advice is highly appreciated, thank you for your time.

Answer
Dear Cayla,
I have forwarded you question to a friend of mine in NY. I'll get back to you as soon as I hear from him.
Meanwhile, please check the Ectodermal Dysplasia Society website at www.ectodermaldysplasia.org for more information regarding providers and possible funds for patients like yourself.

Regards,
Dr. Elsafi

Prosthodontics

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Mohamed Elsafi, DDS, MS, FACP

Expertise

I am a board-certified Maxillofacial Prosthodontist. I do head and neck prosthetic reconstruction for patients with congenital and acquired defects. This also includes trauma and cancer patients. I can answer questions about prosthetic rehabilitation of the head and neck area. I am also a board-certified prosthodontist and can answer questions about dental reconstruction including crowns, bridges, veneers, partial and complete dentures and implant restorations. I can also answer questions about TMJ problems. I can not answer about surgical reconstruction.

Experience

I am a board-certified prosthodontist and maxillofacial prosthodontist and have been practicing denitstry for over 15 years.

Organizations
American Academy of Maxillofacial Prosthetics. American College of Prosthodontists. American Dental Association.

Education/Credentials
I received my dental degree from University of Southern California. I did my prosthodontics residency at University of Florida and my maxillofacial prosthetics fellowship at MD Anderson Cancer Center in Houston.

Awards and Honors
Chief Fellow at MD Anderson Cancer Center.

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