Support Elan's Dental Surgery for Ectodermal Dysplasia

My name is Elan Breget and I was diagnosed with a rare genetic disorder called Ectodermal Dysplasia when I was 1 and a half. This disorder wasn’t and still isn’t very well known so there’s not a lot of supports I can turn to.

My condition affects me in a variety of ways, as I don’t have functioning sweat glands or tear ducts, which means no sweating or crying. It causes my hair to be very light in color and scarce in quantity, making me appear much older than I am. It also disrupts the growth of my nails and teeth, which resulted in me never having more than two teeth, the two teeth I did grow were sharp and conical in shape, like fangs.

The part of my condition that is the biggest thorn in my side is my teeth, both cosmetically and functionally. I am at the age where appearance plays a factor in relationships, whether they be workplace or romantic, and my teeth have been something I’ve struggled to open up to people about my whole life.

Due to my teeth being very sharp when I was younger, I would regularly bite through my tongue or into my gums. I have been unable to eat most hard foods throughout my life, and this has resulted in a lack of proteins and nutrients in my diet. I have resorted to blending meats and vegetables into smoothies for sustenance, which to put bluntly have been disgusting. I learned to eat some foods with only two teeth, but it was no walk in the park, with many meals ending up being spit out since I couldn’t chew it. This inability to eat is possibly the worst part of my condition, as it has resulted in a substantial lack of growth and has caused an incalculable amount of embarrassing and awkward situations, I have developed an anxiety about eating in public due to chewing weirdly or needing to spit things out.

My parents have been looking into methods to help with my teeth for many years, first starting with dentures which made the appearance better but because I don’t have enough of a ridge in my mouth, dentures didn’t stay in place and would fall out and therefore didn’t help with being able to eat. Especially when I was younger, since the pain and discomfort of having them in my mouth was something I couldn’t handle as a kid. So, they tried to look at more permanent options, eventually finding out about dental implants, however when we looked into the government programs that could help us, we were told that we were required to wait until after I was fully grown (at age 19). For this reason, for years I put up with having no teeth and using dentures despite the discomfort and pain or the bad taste most denture products leave in your mouth.

When I turned 19, we quickly implemented the dental plan of getting surgery to graft bone from my hip and have it transplanted into my upper mouth, the recovery took about 6 months, 2 of which I could not walk at all or without assistance, I couldn’t consume any solid foods for an even longer period, in the process of the transplant surgery my two natural teeth were removed, leaving me with no teeth in my mouth. During this endeavor I was on summer break at my university, I attend post-secondary at the University of British Columbia (UBC) in Vancouver and am studying Biochemistry. While I was in the second semester of my third year, I was notified by my dental surgeon’s office that the recovery period was sufficient to do the next surgery, which would have involved receiving the dental implants into the newly built-up bone, so I took medical leave from school and came home to start preparing for the surgery. This was when we heard that the financial support program for our condition called Severe Oligodontia Funding Initiative (SOFI) would not cover the complete dental bill and that we would need to rake together $50,000 before we could do the next surgery. This came as a monumental shock as we had been told when we first inquired about the dental when we were just finding out about our condition that it would be covered.

I have been waiting almost my whole life to be able to have a full set of teeth, so that I can eat normally, and at the last leg of my journey to achieve my goal I am hit with a 50,000-dollar roadblock that I can’t go around. I am a 20-year-old university student, and I am unable to make that amount of money before my transplanted bone begins to deteriorate which would make the first surgery pointless. I didn’t damage my teeth by being negligent with my dental hygiene, I wasn’t injured and had them knocked out, and I have never used drugs other than medicines in my life.

I need help, I have tried contacting parliament in British Columbia, but I’m told it will take a very long time before they can even review which isn’t to say they may just deny any funding support. I am an avid practitioner/ competitor in Brazilian Jiu-Jitsu for over 15 years and have had to take nearly a year off for recovery, I have taken medical absence from my university to get my surgery, I am putting everything on the line to get this life changing surgery, so if you can please lend me a hand in my time of need I will be eternally grateful.

Thank you,

Elan Breget.