Part of me was shocked and almost upset that he had seen the information I had stashed away in a folder, but at the same time I guess it's time for me to face reality. But then again, how do you explain to your amazingly too smart for his own good, 6 year old that the picture he is looking at, and the information on the paper in his hand could very well be his reality?
Unless you are a super close friend or have known me for most of my life, you likely have no idea that I've had major dental issues my entire life, and until recently I was always told that all those problems stemmed from being born with a pneumonia. My entire life I've been told that all of my dental problems stem from my super soft teeth caused by a very high fever and all the antibiotics the doctors gave to me save my life when I was just days old. I'm 36 years old and I've never understood how something that happened to me as a baby could possibly have caused me so many problems as an adult? I've questioned it for years, but was never able to find any answers until we moved to Mississippi, and the kids started seeing a new pediatrician in Hattiesburg. This guy looked at Edward then asked me about my history, and immediately called BS on everything that I've ever been told. He immediately told me that my problems weren't at all caused by the pneumonia, but that he was willing to bet that it was actually a very rare disease; tooth and nail syndrome, and that I needed to look into it. Tooth and Nail Syndrome (Acro-Dermato-Ungual-Lacrimal-Tooth (ADULT ) syndrome); one of about 180 different forms of Ectodermal Dysplasia.
For the last few months I've been doing a ton of research,and seen multiple doctors, and for the very first time in my life, everything is finally making sense! All my problems that I've been dealing with for the last 36 years FINALLY have a legitimate reason for happening. My teeth are super soft and crumble if you touch them wrong due to a severe lack of enamel because I have a very rare genetic disease that only about 1,000 other people in the US have, and wasn't even diagnosed until 1981. I was born at the very end of 82, so growing up Ectodermal Dysplasia was basically unheard of outside of the team of doctors who diagnosed the first case. In reality there are probably hundreds more than the current thousand or so other patients with this same disease, but it is so rare that most people go undiagnosed, and untreated.
Unfortunately for my family, the genetic factor is pretty strong, and if one parent has the disease there is a very strong chance that a male child will also have it, meaning that Edward could also have it. Luckily for me, being a girl, the symptoms are a lot more mild than they are for males. It's been a really tough pill for me to swallow knowing that there is a high chance that I unknowingly gave my child a rare disease. I wouldn't wish this nightmare on anyone, especially not my own baby. But this is my reality right now, so we are dealing with it the best way we know how.
A couple of weeks ago I was fortunate to get into one of the few treatment centers in the country to have my diagnosis confirmed. Amazingly enough, everything is working out really well for us timing wise because Chris just got transferred back to Alabama for work, and I will be beginning treatment at the University of Alabama in the next few weeks. Our new house is only about 40 minutes away from the dental school, so I won't have to travel very far at all. I am very lucky because most patients have to spend years traveling across the country for treatment. I am very fortunate to be moving locally. It'll be about 18-24 months for me to complete treatment, and at the moment I have no idea what all my treatment will entail. They've already taken a ton of xrays, and made molds of my mouth. Right now we are just waiting on a phone call to let us know that they've figured out a game plan, and let us know what to do next.
I've been keeping all of this really quiet and not telling anyone except on a need to know basis, and I honestly don't even really know what I'm sharing now except that Edward being scared by a picture of another patient basically rocked my world. I completely hate what I am going thru, and I'm praying that Edward didn't get this awful disease from me. But then again, we are very lucky. Ectodermal Dysplasia may be tough to deal with, but it is not at all fatal, or contagious. We are both completely healthy and able to lead totally normal lives. We just happen to have a few issues that will be costing us thousands of dollars to fix. Things could be so much worse, so we are very fortunate. And at least if Edward is eventually diagnosed with me, at least he's got someone to go thru it with, who completely understands what he is going thru. We have each other, and we have Chris who is the most amazingly loving and supportive husband on the planet. We are going to get thru this as a family. Just like we have with everything else.
I've unknowingly battled this disease my entire life, especially the last 10 or so years. No matter what I've done, I've felt like a complete failure. I can't beat this on my own, and it's been making me completely crazy. Seeing the pictures of other patients is really hard on me because of the way I was raised. Growing up in California, my mom and sisters are so incredibly judgmental that they've always judged every single thing in my life whether it was my weight, grades, looks, hair style, personality, friends, music, literally everything. If you've known me a long time then you know exactly how they are and how snippy and judgmental they are about everything in life including themselves and each other. I've never been good enough and I've always been picked on and put down. It's been really hard for me to see pictures of other patients, and a lot of the time to even look at my own reflection because I can see this disease taking over, and it scares the crap out of me. I am having a hard enough time dealing with this on my own, but now I have my sweet baby boy that is being scared by it as well, and it is so unfair. So if you see us struggling, or anyone else for that matter. Please make a conscious effort to not stare or comment on people who look differently than you do. No one is better than anyone else, and you have no idea what kind of battle anyone else is fighting. So please make a conscious effort to keep your judgmental stares and comments to yourselves. I can protect my kids from a lot of things, but I can't protect my baby from this. All I can do is ask for some respect and understanding. You have no idea what anyone else is going thru. So please be kind, and keep your judgment and rude comments to yourselves.
If you'd like to know more about what we are going thru, please feel free to ask, or do the research yourselves.
https://www.nfed.org/learn/types/acro-dermato-ungual-lacrimal-tooth-syndrome/
https://rarediseases.org/rare-diseases/tooth-and-nail-syndrome/
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