It’s common for someone to be missing a tooth or even two teeth. Some studies report about 20% of all adults are congenitally missing at least one tooth. More than 5% of us lack one or more second premolars or upper second (lateral) incisors. Though, numerous missing teeth, is less common.

Leads to Diagnosis

When someone is missing more than two teeth, the dentist should consider an ectodermal dysplasia diagnosis.  This excludes wisdom teeth or third permanent molars.

In many cases, a dentist is the one who makes the initial diagnosis of ectodermal dysplasia when a child presents with multiple missing teeth.

Families may think missing teeth is a just a family trait. While true, the more teeth you are missing, the more likely it is to be part of a more complex genetic disorder. A woman who is missing one or two teeth could be an ectodermal dysplasia gene carrier.

Individuals affected by ectodermal dysplasias may have misshapen teeth. The teeth might be pointed or conical in shape.

It’s Rare

A dentist may have never seen or treated a patient with ectodermal dysplasia. It is likely they covered in dental school. Yet, they have never have seen a patient. Therefore, they may not initially consider an ectodermal dysplasia diagnosis.

According to Timothy Wright, D.D.S., M.S., pediatric dentist at the University of North Carolina School of Dentistry, the failure of one or more teeth to form is a common developmental disturbance seen in humans.

Teeth form from the oral ectoderm and thus are frequently affected in association with hereditary conditions that affect the ectodermal tissues. When an individual has small or misshapen or missing teeth, it is possible and should be explored as to whether they also have one of the forms of ectodermal dysplasia. – Dr. Wright

In 2004, we worked with Frank Farrington, D.D.S., M.S., Emeritus Professor of Pediatric Dentistry, Virginia Commonwealth University School of Dentistry.  We surveyed our families about their dental issues. He found most people with the hypohidrotic (i.e. diminished sweating) forms of ectodermal dysplasias reported missing teeth.

Treating Missing Teeth

There are many different options for dental care to replace the missing teeth.  The dental treatment options vary depending on the person’s age and dentition. You can learn more about age appropriate treatment options in our Parameters for Oral Health Care for Individuals Affected by Ectodermal Dysplasias. Depending on the number of missing teeth, the dentist may want to

  • use a partial bridge,
  • an over-denture,
  • crowns,
  • dental implants or
  • a complete set of dentures.

There may be several treatment options you or your loved one can consider. When you see your dentist, make sure you ask about all possible treatment options. This will help you make the best decision for you and your family.

The most important thing is you seek treatment. We strongly believe children with missing teeth should get their first set of dentures before starting school.

Paying for Missing Teeth

If you live in the United States, fall and knock out some of your teeth, your insurance company will pay to restore those teeth. If you are born with a genetic condition and develop few if any teeth, typically the insurance company will not pay for the care.  They deem it cosmetic. Getting the company to pay likely will take a major effort and battle.

To support you in this battle, the National Foundation for Ectodermal Dysplasias has an Insurance Tool Kit.  The kit will be very helpful to you when you are ready to submit your dental treatment to your medical insurance.  Our motto is “Don’t give up!” Ask the Kennedy family who got coverage for dental care for their four children.

We are launching an advocacy campaign to get insurance legislation in all 50 states.  Our goal is to mandate coverage for the treatment of missing teeth due to ectodermal dysplasia. We strongly believe teeth are not just cosmetic! Replacing missing teeth is medically necessary. We believe every person with ectodermal dysplasia deserves the Power to Smile, eat, and speak with confidence! Join us on July 19th for Ectodermal Dysplasias Advocacy  Day on Capitol Hill.

Next Steps

Dental treatment is perhaps one of the biggest challenges for individuals affected by ectodermal dysplasias.  These challenges include

We have resources to help you at every step along the way!

28 comments on “Missing Teeth, Missing Benefits”

  1. 1
    Jackie Powers on January 10, 2018

    This is amazing. I have severe hypodontia. I’m missing all 4 of my first molars. I’ve been begging the insurance to pay for implants since I can’t use a partial denture and my only bridge is causing problems since my roots are so small. Please keep fighting for people like this. I doubt I’ll ever get implants but it’s incredibly embarrsing to go to a dentist and the person taking the xrays asks if you smoke or don’t brush and that’s why you lost all your teeth.

  2. 2
    lisa brumfield on April 20, 2018

    Looking for a dental insurance that can help me with missing teeth. I have no teeth, please help me find a insurance that can help me

    1. 3
      Jodi Edgar Reinhardt on April 23, 2018

      Hi, Lisa. Do you have ectodermal dysplasia? If so, please call our the NFED office at 618-566-2020 and we will try to help you. If you are affected, we recommend that you submit your dental claims to your medical insurance. Give us a call. Thanks.

  3. 4
    Carol smith on June 14, 2018

    Thank you. We are at a loss my daughter only has 17 teeth and we have paid thousands of dollars for implants and crowns but the teeth are so misshaped and spaced she had trouble eating. We have found a doctor that has a mouth piece made to fit her bite and helps but it keeps breaking due to her bite. This is also causing her jaw to determinate and they are talking jaw replacement on both side which insurance will pay for but not the teeth to prevent this. Her doctor wants to put crowns in to fix her bite and make it possible to eat, smile and get ride of her jaw pain the problem she is now 32 and funds are slim and it will cost around $30,000.00. Looking for advise and help to see how we can get this covered! Count me in to help in anyway

    1. 5
      Jodi Edgar Reinhardt on June 18, 2018

      Hi, Carol. I’m sorry to hear about the complications you are having with your daughter’s dental issues. We recommend that you contact our office so that we can talk to you and provide suggestions. You can reach us at info@nfed.org or call us at 618-566-2020. Thanks! Jodi, NFED, Director, Marketing and Communications

    2. 6
      S.G. on April 30, 2019

      Hello, I can completely relate with your daughter. I’m a 33 year old female that has 17 teeth as well. I went my entire life not knowing what was wrong with my teeth, because my parents never made the effort to look into it. So about 10 years ago, I did my own research because I always wondered why I looked so different from everyone else, and found out about oligodontia and ectodermal dysplasia. I’ve never been formally diagnosed with either one, but without a doubt I have the symptoms of oligodontia. I have never met anyone else that has the same issues so when I read your post about your daughter, it really struck home with me. I applaud you for taking care of your daughter and trying to help her in any way that you can, because I can honestly tell you from experience that not every parent supports their child this way. I wish you all the best and I hope everything works out for your daughter.

  4. 7
    Bridges Port Lavaca TX on August 30, 2018

    Good post! Missing tooth is a common problems. Dental treatments can be adopted to get rid of them. Because the teeth on either side of the dental bridge will need to be filed down in preparation for the abutment, these teeth will be more susceptible to tooth decay.
    Bridges Port Lavaca TX

  5. 8
    Smile makeover Novato on September 18, 2018

    Great tips, I’m glad that I found out about the consequences that come with missing a tooth. In my opinion oral hygiene and professional care is best for having healthy teeth. Thanks for sharing a valuable information. These tips are very useful.
    Smile makeover Novato

  6. 9
    Emmeline Hasseler on November 2, 2018

    Hi. I was born without my upper lateral incisors and have never grown my third molars. Is there a name for lacking these incisors? Also, will my future children inherit this? As far as I know, I am the first in my immediate family.

    1. 10
      Jodi Edgar Reinhardt on November 6, 2018

      Hi, Emmeline. We encourage you to call our office at the National Foundation for Ectodermal Dysplasias. It is possible to be born without a few teeth and not be affected by ectodermal dysplasia. To be an ectodermal dysplasia, typically a person would also have other symptoms which you can read more about here: https://www.nfed.org/learn/symptoms/. While we always recommend that someone see a physician in regard to getting a diagnosis and seeking medical information, we can provide you with more information about the ectodermal dysplasias, ask you some questions and try to answer your questions. Please give us a call so we can more. You can reach us at 618-566-2020 or info@nfed.org. We are here to help! ~ Jodi

  7. 11
    Junhong Xia on December 20, 2018

    Hi, I just took my 7 years old son to see the dentist for cleaning today and the dentist told me he is going to have 3 adult teeth are missing. He also told us my son later will need a lot of dental work done, especially his one of the top incisors is missing. I do have dental insurance but not sure how much we will be covered for this special case. I really need help to know the information about the treatment, coverage from insurance company. Thank you!

    1. 12
      Jodi Edgar Reinhardt on January 2, 2019

      Hello! Does your son have ectodermal dysplasia? If so, please contact our office at 618-566-2020. We can help answer your questions and assist you with submitting claims to your medical insurance. You can also learn more here: https://www.nfed.org/treat/funding-treatment/insurance-assistance-program/.

  8. 13
    Lydia Mejia on January 21, 2019

    My son is missing 11 permanent teeth and was diagnosed with non syndromic oligodontia. Could it be possible that he was misdiagnosed? He is 21 now, no mental or physical disablilities. I(mom) am missing 4 permanent teeth (wisdom teeth), yes the joke in my family is that I have no wisdom. My pregnacy was great! No issues. We have a plan for implants but the cost is about 30,000 after insurance, we will owe 23,000. Can these be considered medically necessary? He can have bone loss. How can I get help or get the insurance medically help to cover this cost? Can you help or help me find someone that can help.? Thank you for your time!

    1. 14
      Jodi Edgar Reinhardt on January 22, 2019

      Hi, Lydia. Thank you for reaching out to us. Can you give us a call at the NFED office? It will be easier for us to answer your questions and talk through the issues. You can reach us at 618-566-2020. Ask for Becky. We look forward to hearing from you! ~ Jodi

    2. 15
      Meghan Elias on June 25, 2019

      Hi Lydia, please read. This is long, but I think you’ll find it very useful. I have Oligodontia (congenital absence of 6 or more permanent teeth…. 10 counting wisdom teeth, but for an oligodontia diagnosis – wisdom teeth are excluded from the missing #).

      In college, I had BCBS health insurance through my university. Since it’s an extremely rare condition, so much of my time went into researching it and trying to understand if it’s possibly covered.

      Important! Oligodontia is coded as a Medical Condition (not dental) so health insurance is responsible paying or reimbursement.

      BILLING — ICD 10 code:
      K00.0 (“Inclusion Terms: Hypodontia & Oligodontia”)

      The above is the medical code for the condition that the billing office needs to put on claims submitted to insurance. On my plan at least congenital Oligodontia was the ONLY teeth related condition that BCBS would cover implants for. I’m unsure if this coverage applies to all plans or not. Definitely read your medical policy. Congenital is key. Dentist notes or x-rays claiming or showing the individual had 6+ permanent teeth absent under the baby teeth is good documentation if insurance requests proof that it is congenital .

      Yes! For health insurance coverage the dentist doing the procedure needs to submit a form to insurance on your behalf explaining the medical necessity of dental implants to obtain pre-authorization. Also important, obtain pre-authorization before starting any of the procedure. Implants are absolutely medically necessary (part of what defines “medically necessary” is restoring/improving function) for chewing & eating. I imagine it’s hard to chew solid food with 11 teeth absent. That alone is enough.

      Further, if requested, the dentist can explain not recommending cheaper alternatives like bridges since they cause damage to adjacent teeth. Implants are best as they prevent bone loss in the gums (which can put him at risk for systemic diseases), loss of permanent teeth in the future as a result of what’s supporting them thinning, and they prevent teeth shifting when placed in the spaces they will stay aligned, etc.

    3. 16
      Jodi Edgar Reinhardt on June 26, 2019

      That’s great information to share! Thank you. We also have lots of information on how to file with your heath insurance. You can fine more here: https://www.nfed.org/treat/funding-treatment/insurance-assistance-program/. Also, know that you can always call our office to talk to someone one on one who can help coach you through the process. We are advocating for the Ensuring Lasting Smiles Act which will mandate the health insurance provide benefits for congenital anomalies. You can learn more about that here: https://www.nfed.org/get-involved/advocate/. Good luck, Jodi, NFED, Director, Marketing and Communications

    4. 17
      Hannah on July 9, 2019

      My daughter is 8 years old and her first full mouth dental X-ray has showed that only 4 adult teeth have developed. We worried initially as she never developed her bottom top incisors and hoped that the adult incisors were all we had to worry about. Unfortunately she is a rare case that will need lifelong dental treatments. I worry about her having other issues after reading more into this such as she’s never had much hair, it’s very thin and blonde and has never grown past her shoulder blades In 8 years, her bottom baby teeth are pointy and are spaced apart, as well as she has had skin issues with itching small bumps on knees hands and elbows. Should I try and have a pediatrician diagnose her? Her father is missing his adult too incisors and I did not have wisdom teeth so hoping she will only have dental issues. Thanks!

    5. 18
      Jodi Edgar Reinhardt on July 10, 2019

      Hi, Hannah. Thanks for reaching out to us and sharing your story. It sounds like it would be a good idea to explore with your pediatrician whether or not the symptoms you mention are related and could be an ectodermal dysplasia, something else or totally unconnected. If you choose to do this, consider taking some information from our website with you. Because ectodermal dysplasia is a rare disorder, don’t assume that the doc will know about it…however they can research it if they don’t. Here’s a link to page with more information about diagnosis: https://www.nfed.org/learn/diagnosis/. Also, feel free to call our office any time to talk, ask questions or receive support. We’d be happy to talk you through it. We are here to help. 618-566-2020 or info@nfed.org. IF you do receive an ectodermal dysplasia diagnosis, definitely contact us so we can send you information and support. Good luck!

  9. 19
    Susan on January 31, 2019

    In 2012 NYState passes a law whereby medical insurance cover restorations required due to a genetic defect that effects jaw joint and teeth – when perr reviewed literature states your prprosed treatment plan is effective/successful! I won a 10 month battle due persistance and support-and kind people at the ins company. Your claim form must use medical disgnostic codes and treatment codes.

    1. 20
      Sharon on April 26, 2019

      Hello my friend just found out her son is missing 4 of his adult teeth can you pls email me @ Sdammeyer613@gmail.com or call this number (631)905-5881 and send me info on what can possibly be done to make insurance cover this ty

    2. 21
      Jodi Edgar Reinhardt on April 30, 2019

      Hi, Sharon. Kelley from our staff will contact you to talk through your questions and see how we can help. Thanks! ~ Jodi, NFED, Director, Marketing and Communication

  10. 22
    Complete Dentures London KY on February 21, 2019

    Missing teeth is a unique kind of dental issue. It is not necessary that without any accident or injury your child’s teeth cannot be missing. It is actually a born condition. It was very good to know that this can be treated properly by using many kind of methods you have provided. Keep sharing!
    Complete Dentures London KY

  11. 23
    Heather on February 27, 2019

    Seeking help and answers, my 8 year old grandson has zero permanent teeth. As a very baby he had to have his 2 front teeth removed as they appeared to denigrate. My son is a single dad with Medicaid for his son. We are at a loss related to treatment options and have already had to have speech therapy at school. Any help would be amazing.

    1. 24
      Jodi Edgar Reinhardt on February 28, 2019

      Hi, Heather. We are happy to provide you with information and help how we can. Can you please email us with this information at info@nfed.org or call our office at 618-566-2020? Then we can talk to you one-on-one and work through the issue. Thanks! ~ Jodi, NFED, Director, Marketing and Communications

  12. 25
    Jonathan Jassey on March 25, 2019

    I’m a pediatrician and myself and one of my daughters are missing 5-10 permanent teeth. Any other cause besides ectodermal dysplasia? What kinds of genetic testing can be done? I want to do it for myself and child. Thanks.

    1. 26
      Jodi Edgar Reinhardt on March 26, 2019

      Hi, Dr. Jassey. Thanks for reaching out to us. Could you please call our office and ask for Kelley at 618-566-2020? She can answer your questions more fully over the phone than in an answer here. Thanks. We look forward to hearing from you. We are here to help. Jodi, NFED, Director, Marketing and Communications

  13. 27
    Debra Pike on June 30, 2019

    Hello,
    I’ve been reading all the post here and it is really helping me. I am now 65 and had at least 4 missing adult teeth. I wore braces on the top to move misplaced teeth back into place and have 2 bridges on each side. Now the other baby teeth are cracking, one is gone on the bottom, the other will be pulled Monday because it’s loose and chewing hurts, it’s a first molar I believe. Another molar cracked and will be pulled also Monday. I have a small jaw but used to it. I am facing $5,500.00 for 3 implants soon and can’t afford it with all other medical I have. I have BCBS of Texas and the BCBS Dental. My oral surgeon is good but his office says nothing will pay for implants. Medical told me they would if he would file the correct codes. He’s afraid of getting in trouble and I can’t blame him. I will call you soon.

    1. 28
      Jodi Edgar Reinhardt on July 1, 2019

      Hi, Debra. Our staff would be happy to talk to you about how to file your claim under health insurance to try and get benefits. Do you have a type of ectodermal dysplasia? Feel free to call our office at 618-566-2020. ~ Jodi, NFED, Director, Marketing and Communications

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