Ectodermal dysplasia (ED) is a genetic condition that results in defects of the hair, nails, skin, sweat glands, and teeth. There are over 150 different types of ectodermal dysplasia, most of which share a common group of symptoms ranging from mild to severe.
The condition is not very common, affecting only around three of every 10,000 people. Ectodermal dysplasia is so uncommon, those affected by it often feel alone and may have many questions – Why am I like this? What can I expect next? Who do I see for treatment? These feelings of loneliness and despair extend to family members as well as loved ones, who feel unable to help and often feel they have nowhere to turn.
There is hope. There are sites on the internet that reveal a very active ED community. The National Foundation for Ectodermal Dysplasias website and social media support groups are just a few examples. The people in these forums tell their own stories and provide support to those who have been recently diagnosed or who have been dealing with ED for most of their lives. These are real people with ED and their family members. Group members also relate experiences they have had within the very narrow group of trained providers who treat the oral effects of ED.
The oral manifestation of ED can vary from mild to severe. Mild cases may consist of only one or a few missing or misshapen permanent teeth, whereas more severe forms of ED may have a complete absence of any permanent teeth. Because permanent teeth are integral to proper jaw growth and development, more severe cases of ED can have smaller-than-ideal jaw structure unless early orthodontic intervention is performed. Without assisting growth and development of the jaws in these cases, airway and breathing issues can occur in adulthood.
At OP, we have a passion and a long history of helping patients reconstruct mouths that have been affected by all sorts of genetic conditions, including ED. This history has helped us understand the fears, concerns, and hopes of patients from all parts of the United States. We are equipped in a very special way to make this journey with our genetic condition patients. While every single treatment plan is as unique as the person it is formulated for, we have found that there are common general questions about the oral effects of ED that are frequently asked by individuals and their families.
What age should my child be before I start seeking out a plan for treatment?
Finding out your child has a genetic condition can be overwhelming, particularly if the symptoms of the condition are visible and can limit active daily life in the way that ED can. We encourage parents of kids with genetic conditions like ED to consult with us as soon as they receive a diagnosis.
Depending on the child’s age and ability to cooperate, the use of 3D CT scans can tell us what permanent teeth did not develop, giving us a general idea of how severe the oral component of ED will be. In addition to being of utmost importance, this first diagnostic 3D scan can be a comforting step for the entire family, as it can help formulate a long-term game plan and make the road ahead in treatment much less uncertain.
Who besides a Prosthodontist will be involved in my treatment?
The oral symptoms of ED are well known and documented in the medical community; however, there is a lack of awareness in the dental specialty community. This is unfortunate because they are in the best position to guide individuals affected by ED to the best course of action. Generally, a medical specialist will likely suggest that a patient affected by ED go see their ‘family dentist’ for treatment. However, family dentists are not trained to manage the complexities of ectodermal dysplasias. And most family dentists agree.
Prosthodontists are trained in complex oral reconstructive treatments for all types of medically related conditions, including ED. Serving as “the coach” for your reconstructive team. The prosthodontist would work with you to find an orthodontist qualified to move available, erupted permanent teeth into the correct positions, as well as help guide the development of the jaws and airway as the patient grows. Typically, the orthodontist chosen by you and your prosthodontist, would be involved in the early stages of treatment (particularly in cases of young people with ED), and would depart the team once growth of the jaws and face were complete.
What age can I start treatment, and how long can it take?
The oral symptoms of ED can be noticeable as early as age six. Most children of this age (including those not affected by ED) begin to lose baby teeth at this time and have many spaces in their smile as their permanent teeth begin to erupt. Children with ED can look like other kids of the same age, and likely won’t feel the social pressure of their condition. If a child of this age is feeling the pressure of the difference in their smile, or is having difficulty eating, simple bonding can easily help reshape teeth to a more typical appearance alleviating many concerns. The bonding can also help how the teeth function.
In most cases, children with ED begin to notice the functional limitations caused by their teeth (or lack of), as well as the differences of appearance between their teeth and their peers around ages 9-12 and are actively asking for interventions. While growth of the jaws is not complete by this stage of development, early treatments that involve bonding or long-term temporary crowns to improve the appearance and function of misshaped teeth should be carried out. Creative methods to fill in the spaces left by missing teeth are also available, and can be made to improve the confidence and the ability to eat of the growing child with ED.
When growth is complete (usually as early as age 17-20 in females, and age 20-22 in males), permanent reconstructive efforts can be carried out to finalize treatment. This can involve bone grafting, dental implant placement, and permanent crowns, and typically lasts between 12 and 18 months from the beginning to end of this phase.
How much does treatment cost?
The severity of the oral condition of ED will determine the extent and final investment for treatment, if a patient with ED does not have a qualified medical insurance policy. Because ED is an inherited (genetic) condition, many medical insurance policies have specific provisions in them to help reconstruct the oral health of those with ED. Sadly, there are greater number of medical policies that do not provide coverage for this condition at all, leaving the burden of the investment of reconstructive treatment at the feet of the afflicted. Navigating a medical insurance plan to determine if coverage is provided for ED can be an overwhelming task, and your prosthodontist’s team should be equipped with advocates to help. Once armed with this information and on the right medical policy, the concerns for the cost of treatment are greatly relieved and the focus for care can be on the very best outcome.
As mentioned earlier, qualified specialists to treat the oral condition of ED can be difficult to find. Ozark Prosthodontics has locations in both Fayetteville and Little Rock, Arkansas and to date has treated patients from 28 different states. Our team is equipped with both patient and medical billing advocates, seven surgical prosthodontists, and in-house laboratories at both locations that are manned by multiple specially trained engineers and ceramic technicians. If you need help with ED, have questions about what to do, or are wondering if your medical insurance can help with treatment, our patient advocates stand ready to be a resource for you.