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Ehlers-Danlos Syndrome and Piercings

I’ve discussed before how skin conditions such as psoriasis can effect our piercings, from how we get them to how they heal. It makes logical sense that any condition that effects our skin will have some effect on our piercings. But what about conditions that effect not only our skin but all of our connective tissue?

“Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body.” -Mayo Clinic

Ehlers-Danlos Syndrome or EDS is a condition that many folks live with, and it can effect all areas of your life. There’s a lot of literature online about what you can do to support hyper mobile joints, utilize mobility aids, or for dealing with chronic pain. However, there is not a lot of resources for folks with EDS looking to get piercings. There is even a lot of misinformation online that says you can’t get piercings with EDS- and this just isn’t true! Today I want to look at what EDS is, how it effects our skin in regards to piercings, and how you can safely navigate getting piercings with EDS.

What is EDS?

This is actually not a straight forward question. EDS is a group of 13 heritable connective tissue disorders, caused by genetic changes that effect the connective tissue of the body. Every type of EDS has it’s own features and symptoms, although some symptoms such as hyper mobility, skin hyperextensibility, and tissue fragility are common across the spectrum. That said, many folks with EDS self report symptoms and side effects that are often not recognized by medical professionals. When we discuss EDS as body piercers its very important we research and understand the clinical elements of EDS, but it is also very important we communicate with the folks who actually have it. Especially as EDS is a grouping of different disorders that can vary person to person. However, there are some main factors of EDS that effect us as piercers.

Skin hyperextensibility is the skins ability to be stretched beyond the normal range. Skin extension or stretchiness is measured by punching and lifting the skin, usually done one the palm side of the forearm in the middle. A stretch greater than 1.5cm is considered hyper extensible. Most forms of EDS have some degree of mild hyperextensibiity but some forms may have more severe stretch.

EDS also causes tissue fragility, which can present as easily bruised skin, poor wound healing, fragility of the organs, and easy damaged blood vessels. Other common effects on the skin include abnormal skin texture, thin skin, delayed wound healing, and extreme or abnormal scarring.

Not every type of EDS will have prominent skin issues, and there are some types that won’t effect the skin much at all. The important take away from this is that every form of EDS is different and it may present with different variations in every client. There’s no one size fits all in body piercing, and there isn’t in EDS either.

Healed Lobe, Outer Conch, and Flat for a client with EDS

Piercing Clients with EDS

This next section is for the piercers ( but it’s honestly also for the clients). When it comes to clients who have EDS they can absolutely still get piercings! But how we approach piercing them is very different then how we may approach other clients of ours. To start, it’s important to remember no client is required to provide you with intimate medical details. While it does help us do our job better to know these things, legally we can’t force clients to disclose this.

In an ideal situation, your client will be forthcoming about having EDS, and you can go from there to figure out the best way to work with them. I like to start by asking if they are comfortable, can they disclose their specific variation of EDS, and any major side effects they notice that could effect piercing. This can range from fragile tissue, easy bruising, bleeding issues, etc. From there I like to ask about scarring, I’m usually specifically looking for cigarette paper scarring but I also want to know about any hypertrophic scars or extreme scars. If the client is comfortable, I like to physically assess some existing scars- how does the tissue look and feel? What is the health of the scarring present?

I usually don’t like to pierce clients with EDS the first time I work with them. Because there are so many variations to EDS and it can present in so many different ways, my ideal scenario is to do a through consultation and then do some independent research on this variation of EDS to ensure I understand how it may effect the clients tissue. This consultation is ideally done in person so we can be hands on with the skin and tissue, but it can be done online if the client can’t make multiple trips to the studio.

It’s also worth having clients double check with their doctors that piercing may be safe for them. There is a medical bias against piercings that must be considered when doing this, but having a medical professionals input in this situation is important.

Once I’ve done some research I’ll create a small file for that client with relevant information about how their EDS presents, what we noticed with scarring and skin health, and what their piercing goals are. I like to approach actually piercing with a very cautious method because EDS can be unpredictable with piercings. I like to start with a single piercing that will be easy to heal (ear lobes, a single helix or conch, septum, etc) and with basic jewelry. Because of the issues EDS can sometimes cause with healing starting simple is usually the best for healing- plain implant grade titanium beads and discs are your best friend. Once things heal we can worry about decorative pieces. I also find that folks with EDS usually fair better with larger initial jewelry for stability. For example, a 14g for cartilage including nostrils and septums, and a 16g for lobes. We can always downsize once healed, but often the more fragile tissue it more prone to cheesewire effects from thinner jewelry.

One of the biggest things I do when working with clients with EDS is regular checkins. Every 2-4 weeks I like to have clients send me update photos of how things are healing, and let me know how the piercings feel. This is very helpful for understanding how different clients with EDS respond to piercing. Some clients are going to have very uneventful and easy heals. Others may struggle with prolonged healing, excessive secretion buildup, moisture irritations, bruising, or migration. Documenting the healing process and staying in touch allows us not only to learn how their individual body heals, but make changes to aftercare and jewelry as needed to work through the healing process. This information then lets you know how to further with with that client- if they are healing well and easily I may do 2 piercings next time, or be willing to do a more difficult piercing. If they are struggling and having issues we may need to reassess piercing plans or aftercare to determine what we can safely do.

The biggest take away is to approach each client individually and with care. Everyones EDS may look different, and there is no reason to rush into piercing and doing a lot. A slower, cautious approach to start will allow both you and your client to understand how they heal without overwhelming their body or potentially causing severe scarring or damage to already fragile tissue.

These piercings were done carefully over the course of 2 years, with lots of regular check ins and followups to ensure good healing!

Getting Pierced with EDS

The previous section discussed things from a piercers perspective, but I also think it helps inform clients what getting successful piercings with EDS can look like. What I hear more often than not is folks being told “you can’t have piercings with EDS” or piercers just turning them away and being unwilling to work with them. Your piercer should be asking you good questions about your EDS and listening to you. They should take time to throughly assess your skin and discuss a plan to approach piercing you with care and compassion. It’s a red flag if a piercer just turns you away simply for having EDS but its also a red flag is a piercer says yes but doesn’t seem to really care, and is just going to take your money and pierce you willy nilly.

I won’t deny that EDS does make piercings higher risk. You have a greater likelihood of dealing with slower healing, irritation, migration, rejection, scarring, bleeding and bruising issues from piercing with EDS. However, the same can be said of piercing for folks with other skin conditions and autoimmune conditions as well. We can absolutely still work with and pierce clients with EDS. But in order to do so safely it requires a more conservative approach.

From your piercer, they should be willing to learn about EDS and the specific way your case may present. They should also be willing to listen to you about your symptoms and experience in having EDS. We know that medical information about this is growing but still not where it could be, and it’s very important to find a piercer who is willing to both do the research but also listen to you about your lived experiences.

However, from you as the client I ask for patience. Working with EDS well and ensuring your piercings heal well and without issues does require more work, and often a slower approach. I know you may be excited about all the piercings and all the pretty jewelry you want, but it’s very important to have patience. Plan to start off slowly and understand how your body heals before jumping into doing a lot of work. Be willing to compromise with your piercer on a plan that may mean waiting longer before your goal jewelry or goal piercings. Understand that your body may heal more slowly and your piercer may advise you to wait longer than originally planned to do more. You may also have more work to do with aftercare in order to get your body to heal, and it’s important to be committed to that extra work. From more cleaning to more checkups to more downsizes, be ready to do what you need to to get these piercings to heal.

When it comes to doing piercings for folks with Ehlers-Danlos Syndrome, there is a lot that can be done and I have had multiples clients with EDS successfully heal many piercings. But that success is dependent on a strong working relationship between piercer and client. A piercer who is willing to go the extra mile and do the research and work to learn how to work with every individual client and heal well. And a client willing to put in the work and patience with their piercer to ensure their body heals well. When we work together we can make some amazing piercing magic happen!

To learn more check out this video about EDS and piercings:

Volume 175, Issue 1 American Journal of Medical Genetics

Special Issue:The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes

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