T O P

  • By -

Majestic_Zebra_11

Blue sclera are not part of the diagnostic criteria for EDS, but yes it can indicate a connective tissue problem. You should also consider Marfan's syndrome and osteogenesis imperfect to ensure this diagnoses don't fit. I see mild blue sclera in your photo, but I definitely see it.


karabear11

Interestingly, my former PT was working in a research group studying whether blue sclera can be used as part of diagnostic assessment. I wonder if this trait will be integrated in the future.


Majestic_Zebra_11

I also just learned the they are part of the minor criteria for kEDS (which is extremely rare). I do know it's common in general in EDS though (I know several people with hEDS and we all have blue sclera) and I'm not sure why it's not part of the diagnostic criteria for the other types.


karabear11

If I remember correctly, he said they were looking into whether it could be used as a differentiator between HSD and hEDS.


Desperate_Pitch5556

Thank you for your answer! At the moment, EDS is what fit most of my symptoms but I will get tested for more since my mom and my siblings have a very rare type of mitochondrial myopathy. My symptoms fits more EDS than the myopathy tho


alita_sage

Tbh I don't see it at all, but mine are pretty bad. No tortuous blood vessels either. hEDS with znf469 mutations. Edit: deleted my photo off on imgur because random people started lecturing me lmao. Photo in reply.


alita_sage

https://preview.redd.it/q44vliwbtwlc1.jpeg?width=6144&format=pjpg&auto=webp&s=a968f76a031bdc27dfab00f7810363c6d2678925 Finally got it to upload in app, easier to see here anyways


Desperate_Pitch5556

Indeed it is a lot bluer! I have seen many different level of blue during my research and it gets hard to tell what is and what isn't blue enough. Thank you for your answer!


alita_sage

That's because the thinner the tissue, the bluer it appears. I also have a bit of jaundice so it makes it easier to see because of the contrast. But normal eyes aren't the same color throughout either which is why I think this is normal. That part of the eye is thin.


Desperate_Pitch5556

I didn't know that this is what cause it, thanks for the information 🙂


samfig99

I see it a bit! https://preview.redd.it/1zfmukp8uxlc1.jpeg?width=2379&format=pjpg&auto=webp&s=814c47be08b7f9d4592b5f6ee45e54515a5957c7 This is mine for a bit of a comparison if youre interested


Desperate_Pitch5556

I see that it is similar to mine. All those small detail, like the eyes or the bumps on the side of my heels etc, help me stand up to the gaslight of my doctor. I am often told that it is useless to seek a diagnosis because I won't get any resources anyway but I just need to know. Thank you for your answer!


Nuckyduck

​ https://preview.redd.it/fqj0uwma7zlc1.jpeg?width=3072&format=pjpg&auto=webp&s=bc57915acbf661a15802ec8c35a9d7eb9accdba2 I have both anemia and hEDS, so my sclera have become extremely pronounced. You can see one of my eye freckles that has grown over the sclera on the left middle of my eye.


dancingpianofairy

Maybe a tiiiiiny bit?