u/hanniballactator

hi! (i know this is a relatively common topic of discussion here, but i was having a hard time finding detailed responses that weren't from those with minimally skin involved hEDS, so just not very helpful for me personally!)

i have very fragile, stretchy skin with significant atrophic scarring and deep stretch marks virtually everywhere, as well as some papyraceous scarring at a few sites. basically – my cutaneous wound healing and scarring is very bad, so i already have a very uneven, unpredictable canvas HAHA

i’d love any insights from people with similar skin characteristics as me when it comes to tattoos!

• are there any spots that have been uniquely difficult or easy to heal?

• has your overall skin response to things like cuts and injections been a good predictor for your tattoo healing?

• what was your healing timeline and tattoo characteristics (e.g. size, thickness of line work, density of shading, etc.)?

• did you do anything unusual in your aftercare to promote better healing and reduced scarring?

thanks a ton in advance :)

P.S. in any case, if i get tattooed for the first time to test out, i will be heavily researching the artist beforehand, doing it small and somewhere that's out of my sight, covered by clothes, and unlikely to get particularly bashed up LOL (so backs of upper arms or thighs likely)

hiya! i have always assumed i have hEDS essentially because i'm hypermobile and am not gary turner, but a doctor and PT have said it would be wise to actually get molecular testing because i have a lot of skin involvement (including hyperextensibility past the base criteria, just not ... 15cm+ extensible) and a family history of even more skin involvement. turns out i meet both major criteria and 7/9 minor criteria for cEDS, but i live in a healthcare desert with geneticists who only take vEDS patients for obvious scarcity reasons

on a whim, i booked with genome medical and was surprised they had almost same day availability. i booked for the next week, and had a really fantastic visit. my counselor was super personable and thorough.

some things i especially appreciated:

— she gave me an actual tangible next step if my results are negative, which is getting reevaluated for hEDS by a clinician i've already established care with now that there's no proverbial "STOP! OTHER SUBTYPE!" flag

– she recommended the invitae panel, and even though i didn't really care about having TNXB tested, i think it's interesting and asked out of curiosity if it would ever be recommended in a case like mine. she confirmed (more politely than how i am saying it) that someone covered in atrophic scars with a perfect dominant inheritance pattern does not need it and my insurance wouldn't cover it, but that she would make it happen now if i really wanted it, and that i can always come back for single gene testing if there's some change in literature or health history to indicate it

– very knowledgeable even about the unexpected, like knowing the name of a slightly obscure public health initiative in a state she is not based in and has never worked without me even needing to say i'd been a participant by name

– made sure i knew that a diagnosis might affect my ability to get life and disability insurance (among other things i forgot!) and said she would send me literature on that if i was concerned and that it's okay to postpone or entirely forgo testing for that reason

overall, i was just incredibly impressed by how well she made sure to answer every single question and to guarantee your medical autonomy while still also not potentially risking your money over a low risk. very well-measured. whether cEDS is ultimately confirmed or refuted, i still am super glad i decided to do it this way after all! :)

Hello!

I've read a few times that striae/stretch marks are rare to virtually unheard of in those with cEDS, incl. in an overview of multiple EDS subtypes by Dr. Glenda Sobey and a figure of 3/40 cEDS patients displaying striae in a study by Ritelli, et al., the latter of which I have seen cited in a few different subsequent overviews of cEDS and studies of the skin in patients.

I'm trying to find more data on this though, including bigger studies, but am not having the best of luck. Admittedly, I might be a bit of a troglodyte when it comes to the physiology here because reflexively I assumed that a deficiency in collagen type V might produce more striae than the average person—or at least not be correlated with fewer striae, even if types I and II have a much bigger role in formation of striae—so that's some of my curiosity!

In any case, I wanted to see if anyone here had some additional published data on this, and/or if you or someone you know has cEDS with notable striae. Thanks much!

I regularly see people troubleshooting their septums, and receiving a comment that, "If it was performed correctly, it wouldn't hurt!" Or a variant like, "It only hurts if they pierce through cartilage."

Nasal septums are wonderfully complicated structures, but essentially the pierceable tissue ("sweet spot") is soft tissue called the septum mobile nasi which bridges the harder alar cartilage with the columella, which is the visible fleshy tissue that separates your nostrils at the bottom. ^(†)

If you're pierced through either thicker cartilaginous structure, it almost undoubtedly will hurt, regardless of your overall individual nasal anatomy and pain tolerance!

Buuuuut, piercings perfectly placed in the sweet spot can still hurt! This all comes down to variables like tissue thickness, previous surgeries^(‡) or trauma, overall pain tolerance, etc.

So, if someone says their septum piercing hurt like nothing they've felt before and the photo shows it through their columella hanging on for dear life, it's fair to infer that the level of pain was influenced by truly poor piercing.

If someone shows a photo that appears to display proper placement, should not assume that the piercing was performed incorrectly placement-wise just because OP says it was painful at all. It's a puncture wound, and sometimes they hurt no matter what!

——————————

^(†) Quoting Dr. Joseph S. Stovin in a rather old (1958!) but still helpful article as to what the septum mobile nasi is and does (because I think this is cool and want to share):

"It lies between the semirigid columella and the more rigid septal cartilage. This membrane acts as a buffer between the columella and the cartilaginous septum, softening blows to the lower nose. It may be likened to a shock absorber, absorbing shock-producing blows."

^(‡) Anecdote: I had my septum pierced five years after a septoplasty. Perfect placement and it healed like a dream, but holy Mary mother of GOD did I feel like I was dying that brief second the needle went through!