“It’s incredibly rewarding to, in many ways, change people’s lives. – Dr. Jon Korostoff

Dr. Jon Korostoff is an unsung hero of the National Foundation for Ectodermal Dysplasias (NFED) family. His humble approach to dental care can be misleading because he is truly changing the lives of his ectodermal dysplasias patients.

His career at the University of Pennsylvania (UPENN) has spanned over 30 years. He specializes in periodontics, a branch of dentistry that concerns the gums which support teeth structures.

About ten years ago, a chance encounter with NFED Executive Director Mary Fete would add a whole new dimension to the way he worked. He would go on to establish UPENN as an NFED Dental Treatment Center after learning about the dental complications of the ectodermal dysplasias community.

“It goes beyond any financial award you can get in the dental field.

The ultimate reward for Dr. Korostoff is the reactions of the ectodermal dysplasias patients he treats. He sees them transform from the time they walk in the door to the moment they walk out.

While his work can be rewarding, it is certainly not easy. First, going to the dentist is not often on the top of anyone’s list of favorite things to do. However, Dr. Korostoff finds that ectodermal dysplasia patients have different attitudes.

It can have taken years of searching before Dr. Korostoff’s patients find him and his team. Such patients have endured numerous appointments that led to no results. Their gratitude does not go unnoticed by the dentist. It inspires him to continue his work.

“I am willing to do whatever I possibly can to help. It is a wonderful cause.

The Center’s team at UPENN consists of six or seven specialists and 25-30 residents studying at UPENN. One of the advantages of his center is the availability of seeing multiple specialists in one location.

Because UPENN is a university, they can keep their costs down. In most cases, patients only need to pay for lab fees and the materials used in their treatments. Implant donations from programs like Straumann also help ensure that ectodermal dysplasia patients can afford the care they need.

Looking towards the future, Dr. Korostoff hopes to serve more patients. Many of his patients travel from more than two hours away, sometimes across the country. His team tries to fit in as many appointments as necessary while his patients are in town.

Dr. Korostoff does not actively participate in research, but he is excited for a new addition to the dental program at UPENN. UPENN unveiled a new prosthodontic program in July, which enhanced the Dental Treatment Center.

 “Don’t be scared off by what you’re facing.

Ectodermal dysplasia cases can be daunting for dentists who have never seen or treated any of the conditions. Dr. Korostoff recommends that dentists approach such cases with a commitment to providing the best care to their patients. Dentists should try to find other dentists or specialists who have treated ectodermal dysplasia.

At the core of everything Dr. Korostoff does is a dedication to providing the best care for his patients. He is thrilled with how far the Dental Treatment Center has come and looks forward to keeping his patients smiling!

2 comments on “Why One Dentist Loves to Help NFED Families”

  1. 1
    Virginia Shea on December 9, 2017

    I believe I may a rare form of ED, but no one is sure. I would love to find a good dentist who might treat me closer to Fayetteville, PA where I now live.
    On 11/16/17, I broke the upper left anchor tooth for a partial denture. With the broken tooth, I have a total of 19 teeth, (combined total of 7yrs. orthodontia), and some aching in the lower right jaw due to a “Md. bridge” that was installed in 1991; broke out about 16 yrs later; reinstalled with cement and had to be removed by a new dentist who restored the damaged teeth. The aching continues. I have interviewed three dentists re the repair of broken tooth. I also need a new partial and ortho retainers made to keep teeth in place (the teeth move so fast). The complicating factors: weakness in hands due to arthrogryposis makes it more difficult to pull out retainers; and Bisphosphonate-Related Osteonecrosis of the Jaw (BRONJ) from taking Osteoporosis drugs that were prescribed by mistake (I had bone thinning due to a Parathyroid tumor that was removed 9/08; but not osteoporosis).
    If the prosthodontist (Julie C. Berger) I see next week does not feel comfortable with a conservative approach, can you see someone like me soon; and are there overnight facilities where I might stay? Thank you.

    1. 2
      Kelley on December 11, 2017

      Hi, Virgina. I’m going to send you an email.

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