High Arched Palate
One of the diagnostic markers for Ehlers-Danlos Syndrome is a high arched palate (roof of the mouth). I took pictures of our palates and collaged them and here is the result. I know for sure that John and I have them (adults in the pics) and Joey also has EDS and likely has the high arched palate as well (upper right). Katie (lower left) is the only one that doesn't have an official (or at least semi-official) diagnosis of EDS--no geneticist has examined her yet.
Non-medical professionals will look at these pictures and wonder what the difference is between us and "normal" people. Well, honestly, I don't know. There is not a single picture amongst all the the internet medical websites labeled as a normal palate taken from an angle that normal people can view without a periscope, and I am not going to wade through the gazillions of pics on the web to find 1 picture of a person yawning or yelling taken by a very short person. The main reason I am posting these pictures is that there are no pictures on the net of a high arched palate in a person with Ehlers-Danlos syndrome--all of the others are pictures of people with extreme cranio-facial deformities, and if you had extreme deformities, you were probably diagnosed in infancy.
So this is my charge to you, gentle readers: please send me pictures of your palates if you are not a genetic mutant....oh, wait, everyone has one genetic mutation or another. Ahem, send me a picture if you are sure you don't have EDS or if your palate looks different than these. Oh, if you have large bumps that to the layperson's eye look like tumors, those would likely be torus palatinus. You can send those too to fulfill the public's voyeuristic urges. :) They won't be helpful for teaching those doctors who finished last in their medical school class how to diagnose EDS, though.
Oh, you want to know how to send me pictures? Hmmm, well you can always post on one of those image sharing websites and send me the URL via a comment here or you can email me at [my first name] AT christinasbookshelf DOT com--you should be able to solve this riddle for foiling wannabe spammers.
Labels:
Ehlers-Danlos Syndrome
7 comments:
Christina,
I'm a medical student with EDS and came across your webpage haphazardly in a broad search of clinical findings, etc (normally I'd use more scholarly sources but I was tired of the dry information I came across). My case of EDS is type II I believe and is a mild one at that (I had to give up my circus dreams).
A dentist told me I had a high arched palate a long time ago, and I never really thought much of it until I started having difficulty breathing through my nose (allergy-related). A high arched palate can decrease the volume of the sinus passages making breathing more problematic. Though it's not clear as day light why EDS leads to high arched palate, I'm really glad I found this bit of information you have shared; I'll definitely share it with my peers when relevant. Thanks!
I would hypothesize that collagen, the most abundant protein in the body, when unstable (such as the case in EDS), can lead to problems with development (though minor here, thank God). I hope you're not too bothered by your "high arched palate." It's really not so bad after all! And yes, we are ALL mutants of some type. With the boom in genetic sequencing, all people will see this. In fact, it was recently discovered that the average human being only shares 95% of genetic info with others (previously thought to be over 99%). What should be interesting in the future is what we do with that information. Your children may have the ability to pick and choose among their genetic traits. There are obviously many problems with this, but it could help to attenuate the prevalance of genetically caused health problems in future pops.
Take Care,
Chris
When I searched for images of high-arched palates before posting this, I could not find any images of palates that weren't cleft or they were from an angle that an average Joe couldn't replicate at home. I did find that high-arched palates are associated with many genetic defects, not just EDS or connective tissue disorders.
I had lots of breathing problems growing up, mostly related to a deviated septum which I had for as long as I can remember. My mom was told when I was young that I really needed to have surgery to correct it. She poo-pooed that idea because it cost good money. I rarely could breathe through my nose AT ALL because what the deviated septum didn't block, inflammation due to allergies did. I finally had the surgery as an adult, by the surgeon in a 6-ENT-surgeon group who handles the most complicated surgeries. She said she had never before seen a deviated septum as bad as mine.
Now that the septum is fixed and I am taking Singulair for allergies, I still have some difficulty with breathing through my nose, and I think it might be related to the reduced sinus size you mentioned--and also to EDS-caused lung problems. Evidently EDS-affected alveoli tend to collapse when breathing out, and that may be my problem, because I need to breathe in with more force.
Good luck with med school! I hope to get back on track to go to med school, after I kick Lyme Disease-mediated brain fog to the curb; hopefully permanent neurological damage hasn't occurred. Hah, my brain was already warped, so I will never be normal. :)
Christina
LOL I got diagnosed a couple weeks ago with EDS III & the geneticist told me I have a high, arched palate. I found this blog post while trying to find out what exactly that means haha.
Hey,
thanks a lot for sharing the pictures. I was searching for a picture of high arched palate and I came across your blog on Google.
It helped me learn what a high arched palate is.
Thanks!
Thanks for the information. I had never heard of that connection before. I have very mild EDS type III (I think)flexibility & a little skin stretchiness, no pain.
I randomly found these on google:
http://webpages.charter.net/res7k9nc/forums/health/roof-of-mouth.jpg
http://lh5.ggpht.com/_2BLmilxXDIg/R02462lsdaI/AAAAAAAACYU/NR2dHXyAn9s/DSC01313.JPG
http://lh6.ggpht.com/_2BLmilxXDIg/R1g7e9FWz2I/AAAAAAAAC9s/oqThUqqcclk/DSC03234.JPG
Cristina,
My Baby has high arched palate?
Do you have any voice/pronunciation problems?
Thanks,
Concerned Mom
At this time, I do not know that I have any speech problems directly caused by the high arched palate. I do have a "nasal-sounding voice" sometimes because of allergies to what seems to be everything in the world. [Technically, my voice is non-nasal, as the sound doesn't travel through my nose. Most people hardly know anything about anatomy, and thus the phrase "nasal-sounding." More medical education than you wanted, I am sure!]
Anyway, to my knowledge, a high-arched palate does not doom a person to speech impediments. Where a high-arched palate does matter to babies is in breast feeding. Because the palate does not compress the nipple properly, the baby's sucking pattern will change, and the poor mother's nipples may get very sore. If this is the case, a lactation consultant can help immensely.
What is of more concern for speech problems is why the high-arched palate occurred. Many different genetic defects can cause high-arched palates, and these genetic mutations can also affect muscle strength, the vocal chords, and muscle coordination. In the case of high arched palate caused by hereditary connective tissue disorders, such as Ehlers-Danlos Syndrome and Marfan Sydrome, the ligaments, tendons, and fascia are weak/defective and the muscles have to be much stronger and more coordinated to overcome the weak connections. My son has been speech-delayed because it has taken him much longer to build up enough muscle tone to talk properly. But once he is strong enough, his speech will be normal and completely understandable--well, at least until his vocabulary surpasses the listener's. Many children receive speech therapy--at least 3 out of 15 children in my son's class--so it is actually a rather normal occurrence.
Hope this helps! And remember, worrying is just like a rocking chair: it gets you nowhere. :)
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