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!

60 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.

    1. 2
      Emilie on November 7, 2019

      I’ve got the same problem. I’m missing 9 teeth and 8 of them are molars. I can’t chew properly because of that and that causes indigents, so I really got a serious problem with that, but insurance is never going to pay for implants. But the funny thing is, that insurance is paying braces for people, who actually could live without having them and who would just look ugly, if they haven’t had them, but insurance doesn’t pay implants for people like me or you, who need implants to be able to chew properly… I think the whole system is totally wrong and this is only one little example. The worst thing about this is, that everyone knows that literally nothing really works nowadays, but no one is doing anything about it and everyone is just allowing the politicians, the insurance etc. to take their money, but to do nothing for them and pretend that everything is all right…. I hope that someday people are going to live in a world where things like that don’t happen anymore.

    2. 3
      Jodi Edgar Reinhardt on November 13, 2019

      Hi, Jackie. Actually, we are doing something to help and invite you to join us! The NFED is advocating for a federal bill that would mandate for insurance companies to provide health care benefits for dental treatment to restore/replace teeth missing due to a congenital anomaly. You can learn more about it here: https://nfed.org/get-involved/advocate/. ~ Jodi, NFED, Director, Marketing and Communication

    3. 4
      Cyla M Bartholet on January 13, 2021

      Sorry to here, my daughter just got diagnosed she is missing all 4 2nd premolar. To soon to do anything yet but once she looses all here other baby teeth we will start discussing solutions. I just hope the 4 baby teeth stay in until she’s an adult.

  2. 5
    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. 6
      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. 7
    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. 8
      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. 9
      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.

    3. 10
      Ali Snow on November 16, 2021

      I don’t know if this thread is still active, but I learned this week that my daughter (currently 11) is missing 11 teeth. I am at a loss with what to do! This feels very overwhelming. I myself have 2 implants from missing teeth, but 11! I don’t even know where to begin. How is something this extreme not covered under medial insurance? It seems to me that 11 missing teeth is not a cosmetic issue but takes away your ability to eat, talk, would create self esteem and metal health repercussions. I just spoke with my dental insurance company and with our current plan (the best one my husband’s job offers) they will pay up to $2,000 for 1 implant every 5 years. At that rate she will be well into her 60’s before she has a full mouth. I would love any advice you might have for me.

    4. 11
      Kelley Atchison on November 17, 2021

      We are here for youm please contact Kelley at kelley@nfed.org for additional information.

  4. 12
    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. 13
    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. 14
    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. 15
      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://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

    2. 16
      Tricia on September 25, 2019

      My son that just is turning 7 we can see that he is lacking the same teeth that I lack!

  7. 17
    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. 18
      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://nfed.org/treat/insurance-assistance-program/.

    2. 19
      Tricia on September 25, 2019

      I still have my baby teeth (2) at age 39. So with proper care you can keep them healthy for a long time.

    3. 20
      Jodi Edgar Reinhardt on September 26, 2019

      We are glad that your baby teeth have sustained you! Unfortunately, that is not always the case for everyone of if the teeth have other issues caused by ectodermal dysplasias.

  8. 21
    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. 22
      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. 23
      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. 24
      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://nfed.org/treat/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://nfed.org/get-involved/advocate/. Good luck, Jodi, NFED, Director, Marketing and Communications

    4. 25
      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. 26
      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://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. 27
    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. 28
      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. 29
      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. 30
    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. 31
    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. 32
      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. 33
    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. 34
      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. 35
    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. 36
      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

  14. 37
    Breanna on July 18, 2019

    We just found out that my 3 (almost 4 year old) has the same condition as my son. He is missing many adult teeth. My husband has over $50,000 worth of dental implants, bridges, etc. in his mouth. We are not sure how we will afford this in the future. I watched my husband go through the pain of a bone graft before his implants and I cannot imagine my baby having to go through it. I worry about so many things. I stumbled upon this site today and I really think it will be helpful. Thank you for any ideas or advice you can offer.

    1. 38
      Breanna on July 18, 2019

      Oops….. *same condition as my husband*

    2. 39
      Jodi Edgar Reinhardt on July 23, 2019

      Hi, Breanna. Thanks for sharing your story. Do your son and husband have ectodermal dysplasia or just missing teeth? We completely understand what you are experiencing with large dental bills and ongoing dental care to replace teeth. We would love to talk to you! Please give the NFED office a call at 618-566-2020 and ask for Kelley. She can help you with ideas and advice. You can also email her at info@nfed.org. Also, we are advocating for the Ensuring Lasting Smiles Act which would mandate that health insurance pay for dental care to replace teeth missing due to congenital anomaly. You can learn more about that here: https://nfed.org/get-involved/advocate/ensuring-lasting-smiles-act/. We look forward to hearing from you and seeing how we can help. ~ Jodi, NFED, Director, Marketing and Communications

  15. 40
    claire on August 22, 2019

    hello, i’m 17 years old with severe oligodontia. I have little over 15 adult teeth misding and now in the process of having my dental work done. my parents are struggling to have insurance see that this is a serious matter. the cost is an upwards of 80,000 and i have been looking for options on how to avoid my parents having to suffer because of a genetic disorder. i’m starting college soon and don’t want my parents to have to worry about money issues. if you could possibly help or think that my family and you can convince our insurance to pay please write back.

    1. 41
      Jodi Edgar Reinhardt on August 26, 2019

      Hi, Claire. We understand your situation! It’s challenging enough to need complex dental care and then to have to fight for benefits you deserve on top of that! Could you please email us your request at info@nfed.org? Our staffer who helps with this can talk to you about what’s possible. Good luck! ~ Jodi, NFED, Director, marketing and Communications

  16. 42
    Ewan Davison on September 21, 2019

    Missing even one tooth may have emotional consequences; many people feel less confident about their smile when they are missing teeth.

    1. 43
      Antoinette K. on May 23, 2020

      Your absolutely correct about that and the only thing they want to do is throw dentures in people mouth.Those implants are way too expensive for most people. It should be something they should do to help those that are missing front teeth mainly and then work around to the back

  17. 44
    Tianna Martinez on November 11, 2019

    I have two baby teeth still because I never developed adult teeth under them. Dentists always seem exciting when they see this and act as though I don’t know this at age 30. I had one silver capped to salvage it when I was little and it seems to be working but my other tooth was not capped and I’m having issues with it. Literally all my teeth as a kid had cavities. I’m worried they will have to pull my tooth and then I’ll have a gap and my teeth will start to shift.

    1. 45
      Jodi Edgar Reinhardt on November 13, 2019

      We hear you. Are you affected by a type of ectodermal dysplasia? We do have affected individuals who also develop few if any of their adult teeth. Have you explored potential treatment plans with a dentist? ~ Jodi, NFED, Director, Marketing and Communication

  18. 46
    Nicole Cervino on February 18, 2020

    My daughter is 11 and is missing 7 adult teeth. She doesn’t have any of the other symptoms of ectodermal dysplasia however. We thought about taking her for genetic testing but since she is lacking other symptoms would that be worth it? Are there any other options for financial help for dental treatment if it is not ectodermal dysplasia?

    1. 47
      Jodi Edgar Reinhardt on February 18, 2020

      Hi, Nicole. Thanks for the question. It’s hard to say for sure if it’s worth testing or not. That said, in some cases, females with a type called x-linked hypohidrotic ectodermal dysplasia, may have the gene and only manifest one symptom. Or, they may not show any symptoms, but do have the gene. Many females with XLHED often go undiagnosed until they give births to a male son who is fully affected. It could be possible that your daughter has the gene and is only manifesting the missing teeth. Or, it is possible that she simply has isolated hypodontia (missing teeth) and does not have ectodermal dysplasia. There may be other explanations that we are not aware of but a professional could help determine. Given the number of missing teeth she has, we often suggest that families consider an ectodermal dysplasia diagnosis and consult with a genetics counselor to discuss it. Unfortunately, the NFED only provides financial assistance to children affected by ectodermal dysplasias. If you have any questions, don’t hesitate to call our office. Our staff can talk more with you about diagnosis, etc. Call Kelley at the NFED office at 618-566-2020. Good luck and let us know if we can answer any other questions! ~ Jodi, NFED, Marketing and Communications

  19. 48
    smith patterson on May 14, 2020

    You can’t see the bone inside your jaw but the consequences of bone loss are very real. Bone tissue needs stimulation to maintain its volume and density. When teeth are lost, the jaw bone that once supported them loses stimulation and begins to deteriorate.

  20. 49
    Antoinette K. on May 23, 2020

    Please help me please, I feel so ugly, embarrassed,ashamed and alone. I am unattractive mainly bcuz of no front teeth, I was pregnant several times and lost my teeth during my pregnancies. I am unable to show my smile I have to forever make duck lips. Please help me if you can. I believe the male friend I have never take me around people bcuz of no front teeth.All I ask for is a bridge nothing much. Having someone to help me with my teeth will be so life changing. I am 41 yrz old and im tired of being alone. I have been told that I look young and is beautiful but cry on the inside bcuz I say” if I would open my mouth, they will no longer think that way of me”.:(please someone just help me.

    1. 50
      Jodi Edgar Reinhardt on May 26, 2020

      Hi, Antoinette. We hear your pain and are so sorry that you have lost your teeth and feel so badly. We do understand. Unfortunately, our nonprofit is solely focused on helping people who were born with the rare genetic disorder, ectodermal dysplasia. We encourage you to see if your insurance can help you in getting dentures so you can get the care that you need. ~ Jodi, NFED, Director, Marketing and Communications

  21. 51
    Austina Kempfer on March 10, 2021

    My husband only has 8 permanent teeth. We’ve been working on getting his over bite fixed so we started looking into implants but the first person we talked to about it wanted 50,000 up front. How horrible. He’s only 23 years old and can barely eat anymore. And whats left of his grinded down baby teeth that are to his gums. His moms been fighting with insurance for years to try and get it covered.

    1. 52
      Kelley Atchison on March 11, 2021

      I would be happy to walk you and your husband through the insurance process. Contact me at kelley@nfed.org.

  22. 53
    Kerry on July 22, 2021

    Im trying to see if my insurance will cover treatment. They are asking for the diagnosis code AND the procedural code. We are years before needing this but I just wanted to know if my insurance would cover this. Anybody have BOTH of these codes so I can check? Thank you so much!

    1. 54
      Kelley Atchison on July 23, 2021

      Hi, Kerry, be sure to review the detailed insurance information on our website. https://nfed.org/treat/insurance-assistance-program/. Contact me at kelley@nfed.org with any questions. We’re here to help.

      Sincerely,
      Kelley Atchison
      Director, Family and Community Programs

  23. 55
    Krissy Arnal on November 2, 2021

    I am 36 years only and was born missing 17 adult teeth and had 13 retained adult teeth. I recently (July 2021) had my remaining primary teeth removed. I went in to dental field to learn more about my condition, now at 36 I’m struggling to find the resources to pay for bills that my insurance deny. We have already paid $18,000 for the first step. My old boss (dentist) wrote letters to UCLA & USC, they wrote back saying my case was to complicated. I am so glad to see you guys helping others! Great job!

    1. 56
      Kelley Atchison on November 2, 2021

      Hi, Krissy. I would love to connect with you share how the NFED can assist you. Please contact me at Kelley@nfed.org. ~Kelley

  24. 57
    Karen Gali on November 11, 2021

    My daughter was diagnosed with Oligodontia after having her first set of x-rays done at her dentist. She is now about to turn 17 and things are finally starting to be ready for her. She is presently on her 2nd set of braces, had a few baby teeth removed because they were painful & sunken into her gums. I consider her lucky since she has all her front adult teeth and you only can tell she is missing teeth when she smiles big or laughs. Unfortunately, she struggles with chewing & eating most foods is difficult. We have taken her to see many specialists and have been told its too complicated or we disagreed with the direction they wanted to go in. With the help of her pediatric dentist, we have been able to get a “team” of Dr’s/Specialists who are working together. She will be having jaw surgery in the Spring 2022 and then after that she is hopefully closer to getting implants. I WILL fight the insurance companies and I would love some direction as to how to do this. Thank you so very much for everything you all are doing!!

    1. 58
      Kelley Atchison on November 12, 2021

      Hi, Karen. Please visit https://nfed.org/treat/insurance-assistance-program/. Contact Kelley at kelley@nfed.org with questions. Have a great day!

  25. 59
    Helen on March 2, 2022

    Hello. My son is missing 5 adult teeth. 4 premolars and a canine. We have been running among adult and pediatric dentists, orthodontists, and Surgeons, and none of them can really tell me what should be done. He’s now 16 and not ready for implants, but once he does, he will be out of his pediatric dental insurance which means implants are not covered. Can you help me navigate this process. Thanks!

    1. 60
      Veronica Minard on March 4, 2022

      Hi, Helen! We are so glad you reached out. Please contact our director of family and community programs, Kelley, at kelley@nfed.org to get more information in regards to navigating insurance, etc. In the meantime, you may also be able to find helpful resources here: https://nfed.org/treat/insurance-assistance-program/
      Wishing you and your son all the best!
      -Veronica

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