Life with Periodontal Ehler-Danlos Syndrome

This has been something I have been avoiding doing for a very long time.

Admitting you need help is incredibly difficult, but accepting help is a whole other challenge. Over the years, I took pride in being able to work hard to afford my full mouth rehabilitation and medical needs, and never in my life thought there would be a day I could not work due to my health. From organs being removed to teeth yanked left and right, I was always bouncing back to keep working towards my full-mouth rehabilitation. As of March 2022, I no longer was able to work. My story is chaotic, long, and definitely not pretty, but I am going to do my best to summarize what has been, and what is currently happening, without it being a complete novel.

Since childhood, I have suffered heavily from TMD (the dysfunction of the Temporomandibular Joint – TMJ). At age 12 I finally got the diagnosis of this joint issue and was advised at this time, in my province of British Columbia, TMJ / TMD services have been seen as cosmetic or dental – therefore MSP has covered 0% over the last decade, from emergency surgeries from the hospital costing $3000.00 at 17 years old when my jaw snapped through the socket, to any other treatment to relieve jaw pain, is thousands out of pocket.

At 18, a minor car accident put me into the hospital where I was quickly prescribed a high dosage of Naproxen for pain and told the tear in my back would get better in time. During this time of the prescription, I got incredibly ill. Later, after months of vomiting turned to blood, it was found that the Naproxen ate my stomach lining, causing Peptic Stomach Ulcers.

Like most of us, I assumed every time I got sick, I would brush my teeth. Didn’t matter where I got sick, I always had my travel-sized toiletries on hand for when I was getting sick at work or on the way to work.

By 19, after I smashed my front tooth out on a mug, I found out the damage I had done to my teeth from vomiting and brushing on end for months. I completely obliterated the enamel off my teeth, I was given the choice of trying to save my teeth with very low and unlikely chances of a filling, crown, etc holding as periodontal disease became present from the stomach acid being continuously brushed into my gums – the most cost-effective route and long term solution for my brittle, decaying and broken teeth, were to begin removing them for a denture.

At 19 I got my first tooth on a partial denture, dropped out of college, and quit my two part-time jobs to find a higher-paying full-time job that had benefits. Over the years I would get teeth removed and added to my denture as I could afford to do so.

By 2020 (when my gallbladder decided to say goodbye), my jaw was becoming progressively worse, which is when I was referred to a Prosthodontist and Maxillofacial specialist. They discovered the reason for my TMD and jaw issues since childhood, was a joint development issue. My left jaw joint, left leg, and foot are smaller than the right side to the point they cause discrepancies such as nerve pain, dislocations, and other not-so-fun feelings.

Once this news was found, the process of getting teeth completely changed. As we realized my jaw is essentially and will forever be crooked as it is underdeveloped, I will need a specialized denture that is basically crooked to my jaw.

After getting the remainder of my upper teeth removed in October 2021, a nerve somewhere in the left quadrant of the jaw became damaged, on top of an immediate upper denture that did not fit and pressed on this damaged nerve, I began suffering from chronic pain. After numerous doctors refused to look further into the nerve damage, I continued to try wearing a denture that did not fit correctly – at all.

Since October 2021, I have been trying to get medical help for chronic pain; from headaches daily to frequent migraines, to joint pain to the severity I have no longer been able to stand in the shower - as soon as doctors see I have no upper teeth (as the denture given is and always was unwearable) I am very quickly dismissed. All dental work was halted until I had some medical answers as further dental work could contribute to the chronic pain I have been experiencing.

My prosthodontist and dentistry specialists have feared I have had something underlying contributing to the rapid tooth loss, but also the joint issues I have suffered with since childhood.

Finally, after almost two years of trying to get medical help, I was able to see an incredible doctor with the EDS Society. I have now found out I have been extremely hyper-mobile all my life which would explain a lot of the joint dislocations and discrepancies, but I also have a form of EDS.

Unfortunately, as of right now, the top contender for the one of 14 possibilities of EDS I may have, is looking like periodontal Elher-Danlos Syndrome. Which happens to be the rarest form.

Therefore, I have been referred for a very large panel of genetic and DNA testing to get definite answers, but this test in Canada can take up to two years to see happen. The doctor at the EDS society – given the ongoing chronic pain, no upper teeth, and my specialists fear – advises I can speed up this process by ordering the testing online from the United States, out of pocket of course.

My dental specialists fear doing any further definitive care without further answers as to what has been underlying all these years which may very well be the cause of the numerous surgeries I have needed since 16, and the joint issues I have faced since childhood – further dental work, could make the chronic pain I am already experiencing worse.

With severe bruxism, tinnitus, and no upper teeth for almost 2 years, 11 broken and decayed lower teeth, now my upper gums have bone masses trying to form the shape of my lower teeth overnight, and I have run out of time to wait for medical answers. I as well will now need bone shaved to make room for any future dentures as I have had no upper teeth for close to 2 years.

The original plan for what is being called a ‘Full Mouth Rehabilitation’ was going to be:

Unfortunately, since the medical news received, on top of the ongoing severe chronic pain, and the changes to my mouth since having no upper teeth for two years, the plans have now changed. Due to the severity of my jaw issues, to relieve any pain and have this go successfully my maxillofacial specialists have advised I will need the upper and lower denture done at the exact same time.

The plan now will go:

Once I have healed and have had at least some teeth for a year, I will go back to my prosthodontist for specialized dentures for my jaw joints. This may look like a crooked denture for my jaw joints, or a couple of implants to severe a partial denture, but I will not know the plan for my fully permanent teeth until I have made some progress with the temporaries.

Due to my jaw, after any dental work, I need to see my jaw specialist who is roughly $200.00 - $300.00 for 30 minutes of his time. To date, to still be toothless, mangled jaw, and in severe pain, I have spent $9,936.23. In maxillofacial services since 2021 I have spent a total of $1240.00 for consultations or mere follow-up appointments, and 8696.23 between extractions and my partial denture since 2019 including the upper denture I was given in 2021 that did not fit since the get-go.

I have now received the final quote for the temporary dentures, excluding extractions, the bill for the temporary upper and lower denture, and the ‘semi-permanent dentures after 6 months, will be a total of $10,250.00. This is excluding the extractions and the appointments for my jaw specialists.

Since no longer being able to work, and on Long Term Disability, the cost of medical needs such as this Genetic Testing, among the maxillofacial services and dental work, is becoming astronomic.

I used to work two jobs, and was in college for Criminology until I had to focus on a full-time job with benefits and better pay to afford my dental and jaw needs. Since 19 I kept saying, “teeth by 25” … and well.. I turn 25 this November. These last few years have been beyond difficult. I keep thinking in no time I will be back in school, my fiancé & I will finally be able to afford our wedding, and we may even be able to begin saving for a deposit for a house one day, and being able to live a ‘normal’ life as a twenty-year-old. But that hasn’t happened, and unfortunately due to my medical and dental needs, is becoming farther and farther out of reach. The end cost is going to be over $20,000.00 including what I have already spent and the bills to come. With this I could have finished school with a degree, we could have even had our wedding by now, or even have a healthy savings account for a future home. But instead, I have been living paycheque to paycheque toothless, putting any penny into either my dental needs or forms of pain management; orthotics, medications, specialists’ consults, etc.

I have tried my best to advocate through TikTok to break the stigma around bad teeth, no teeth, and dentures, among the severe grey area that TMJ services fall into and how it is time jaw disorders and treatment for such are covered under medical and SEEN as medical. I share the full details and probably too many details on my TikTok of the chaotic journey I have been faced with the last few years if you wish to delve deeper into my story as I tried my best to speed over the last few years here.

This Go Fund Me is going to be helping cover the costs of:

If there is anything left over, it will be going to the cost of the specialized dentures; I will know the final quote and plan for those once I have had the semi-permanent teeth for 6 months.

Any mental or financial support is so greatly appreciated during this difficult time. The support I have received online since opening up about my story has been beyond words and I truly would not have gotten this far in terms of medical help and dental help if it wasn’t for the mass amount of support, love, and advice I have received online. I am going to continue sharing my story and this chaotic toothless journey on my Tiktok as well as on my youtube Youtube.

Thank you SO much for taking the time and energy to read my story, and any help towards getting my life back to normal and being able to eat again means beyond words to me. Any cent given, just please know, you are and will be a huge part of my journey back to normality.

Much much love,

Natalie