Karen S. McAndrew, D.M.D., M.S. is granting five-year-old Kannon Koser’s wish to get teeth. You can read his story here. Kannon is one of nearly 50 individuals affected by ectodermal dysplasias whom Dr. McAndrew has treated.
Learning About Ectodermal Dysplasias
She first learned about ectodermal dysplasias in her prosthodontic residency in 1997 at the University of North Carolina, Chapel Hill. Her Program Director, Dr. Albert D. Guckes, was very involved with the NFED and patients with ectodermal dysplasias.
“This was my first exposure to treating those with this condition and I have been very interested in the great works of the NFED ever since. I became involved with the NFED many years ago and recognize the wonderful works they provide to so many families on so many levels.”
Using a Team Approach
Dr. McAndrew’s private practice, the Virginia Center for Prosthodontics in Richmond has been an NFED Dental Treatment Center for many years. As a prosthodontist, she says she’s the quarterback of the dental restorative team. She develops a comprehensive treatment approach throughout the lifetime of the patient.
“I work with orthodontists, oral surgeons, periodontists and others to develop a comprehensive team approach to care starting at infancy through adulthood. The needs of our patients change significantly with age and development and we set up a plan to take them through all courses of their lives. It is a lifetime relationship.”
Dr. McAndrew is affiliated with the Cleft and Craniofacial Team at St Mary’s Hospital in Henrico, Virginia. She says this connection helps her have the resources to combine care along with other health care professionals such as plastic surgeons, ENTs, oral and maxillofacial surgeons, pediatric ophthalmology, pediatric dermatology, pediatric neurosurgery, pediatric dentistry, psychology, orthodontics, prosthodontics, speech rehabilitation, genetic testing and counseling.
“This (ectodermal dysplasia) is a special condition with special needs and being a member on a team brings about more collaboration and opportunities for treatment. Embracing the entire family ensures ongoing success. Being able to treat these patients is an honor and I am excited about what new success is on the horizon!”
If you or your child is affected by ectodermal dysplasia and are interested in going to the Virginia Center for Prosthodontics, you need to first apply to our Dental Treatment Centers Program.
MY FATHER LOOKED LIKE KEEGAN ONLY SICKER. I TO THIS DAY AT THE AGE OF 57 DO NOT KNOW WHAT IS IS LIKE TO HAVE TEETH THAT FIT OR ABLE TO CHEW FOOD CORRECTLY. WHEN I TOLD A DOCTOR THAT I HAVE ECTODERMAL DYSPLASIAS, HE TOLD ME NO WAY THAT I MUST NOT REALLY UNDERSTAND WHAT IT IS. I KEPT QUITE WHEN I WANTED TO SHOUT, YOU MUST NOT KNOW SO YOU SURE AS HELL DO NOT NOW WHAT IT IS LIKE TO LIVE WITH IT. THE FOLLOWING IS MINE:
NEVER HAD ALL OF MY CHILDHOOD TEETH.
NEVER HAD BUT A FEW OF MY ADULT TEETH.
HAD TO HAVE 2 CHILDHOOD TEETH PULLED AT AGE 22 FOR A PARTIAL.
VERY FEW SWEAT GLANDS. REALLY DIDN’T KNOW I HAD SOME SWEAT GLANDS UNTIL I HIT MENO LAST YEAR. NOW GET WHAT CALL NIGHT SWEATS. I CALL MOIST SKIN. I HAVE VERY FINE HAIR ON MY HEAD & FROM WHAT I HAVE READ AM LUCKY I DO. MY LEFT SIDE OF MY BODY IS ALMOST TOTALLY MY FATHERS. NO SWEAT GLANDS, NO HAIR ARMS OR LEGS. NO BREAST JUST A NIPPLE. DAD HAD 2 NIPPLES ON THE LEFT SIDE
OTHER HALF IS PART MOM & MOSTLY DAD. BARLY SOME HAIR ON ARM & LEGS. THIS IS THE SIDE THAT GETS MOIST IF YOU WILL BUT REALLY ONLY ON RIGHT SHOULDER & UPPER BACK.
VERY LITTLE EYE BROWS ON RIGHT & EVEN FEWER ON LEFT. I BELIEVE MY FATHER MAY HAVE BEEN THE 1ST BLOWN ECTO IN HIS FAMILY BUT I FIND MY SELF LOOKING BACK AT HIS MOTHER & SEE SOME SMALL TRACES OF WHAT MAY HAVE STARTED IT.
I WANTED TO KNOW IF THERE WAS SOME PLACE THAT I COULD GO TO GET HELP WITH MY TEETH. I HAVE LITTLE TO NO BONE & THAT WOULD MEAN BONE GRAPHS. I DO NOT HAVE THE MONEY FOR THIS & MY INSURANCE WILL NOT COVER IT. IT DOES NOT COVER MY BREAST INPLANTS WHICH COST ME $300 – $500 TO REPLACE ONE.
Hi, Connie. Thank you for sharing your family’s experience with ectodermal dysplasia. We do have a network of Dental Treatment Centers you could consider for your dental treatment. You can learn more about that here: https://nfed.org/treat/dental-treatment-options/dental-treatment-centers/. Also, we do offer help with filing claims with your insurance in order to get it covered. You can learn more about that here: https://nfed.org/treat/insurance-assistance-program/. Feel free to call our office any time at 618-566-2020 and our staff can help you! ~ Take care, Jodi, NFED, Director, Marketing and Communications