Although Ehlers-Danlos syndrome (EDS) is a condition you are born with, it may take many years (or decades) before you are diagnosed. During childhood, it might just seem like you’re more flexible or prone to sprains and injuries than the other kids. Doctors might assume your discomfort is just a result of “growing pains.” It may take the progression of several of your symptoms before doctors are able to recognize you have EDS.
“EDS, I would describe it as a genetic disorder of connective tissue,” Paldeep Atwal, MD, a board-certified geneticist, told The Mighty. “It’s when the strength and the structural framework of that connective tissue aren’t as it should be, that’s what’s causing EDS and other connective tissue disorders.”
There are 13 subtypes of Ehlers-Danlos syndrome, though the hypermobile subtype is the most common. Your symptoms will depend on your subtype, but most people with EDS experience overly flexible joints, regular partial or full joint dislocations while doing everyday activities, stretchy or fragile skin, easy bruising, and chronic pain. Because it’s a complicated condition that overlaps with many other chronic illnesses, it’s not uncommon if it takes more than 10 years to get an EDS diagnosis.
After your diagnosis, you might look back and realize that many of your childhood “quirks” were actually early signs of the illness. Perhaps some of these will sound familiar to you, too.
Here’s what the community shared with us:
1. Having Extra Flexibility
If you were the kid who could always ace that flexibility test during gym class, it may have been one of the early indicators you have EDS. Being more flexible than average — sometimes way more flexible — is one of the most common symptoms of the condition. “People tend to be hypermobile. It’s really a hallmark feature,” Dr. Atwal said.
“I was always extremely flexible as a child, even more so than other children my age. At the time it was a benefit because I was into gymnastics, ballet and cheerleading. Not knowing that all the flexibility was a bad thing [and] would later cause me so many problems.” — Grace S.
“I was always flexible but it wasn’t recognized as medically significant until later in life. My first adverse symptoms looking back were that I had GI issues from infancy.” — Erin M. J.
“When sitting twisted up like a pretzel with your feet behind your head playing video games was a totally normal thing for a Saturday afternoon… and you had no idea that wasn’t ‘normal.’” — Laura M.
2. Thinking You Were Double-Jointed
Connective tissue helps hold all your joints in place. Because EDS can impact the quality and amount of connective tissue in your body, many people with EDS are prone to full or partial joint locations. In the case of seeming double-jointed, you’re likely experiencing subluxation, or partial joint dislocations, which are often painful.
“I can sublux both shoulders without conscious thought. As well as other joints that snap, crackle and pop. I just thought I was double-jointed.” — Jacqulyn S.
3. Experiencing Regular Joint Dislocations
In addition to partial joint dislocations, EDS can also make you prone to full joint dislocations. Many people experience joint dislocations, such as in their elbows, shoulders or jaw, while doing everyday tasks like trying to pick up a shopping basket at the grocery store. Joint dislocations occur due to differences in the connective tissues around your joints.
“Dislocating something and not realizing that’s what you were doing.” — Emily M.
“My elbow kept dislocating. I also had many soft tissue injuries as a kid. It wasn’t until I really injured myself and it wouldn’t heal [that] my doctors finally put it together.” — Christa R.
“My sister and I weren’t allowed to hold hands when we were younger because we would dislocate each others’ arms. Turns out we both have EDS.” — Jane B.
“I once dislocated my jaw while eating a bowl of cereal. I avoided that cereal for years because I honestly believed it was the cereal’s fault.” — Melanie G.
4. Always Wearing Support Braces
When your joints are prone to popping in and out without warning or you experience pain and weakness, it’s only natural you might try braces or splints to keep those joints in place. Of course, when you’re a young child, you may be one of the only kids who needed extra support to play on the playground safely.
“All of my teachers thought I was a hypochondriac because I was always wearing wrist or knee braces and going to the nurse with a headache or to get ibuprofen.” — Kelly S.
“Having more splints and braces than clothes.” — Julia S.
5. Bruising Easily
Collagen — the connective protein impacted by EDS-related gene mutations — largely determines the texture and elasticity of your skin. Many people with Ehlers-Danlos syndrome have fragile skin that’s prone to bruising easily and your wounds may heal slowly. Sometimes you won’t even recognize what caused the bruise.
“Waking up with my thumb swollen and bruised. It wasn’t until getting my EDS diagnosis and having my thumb dislocate during the day that I realized why it happened.” — Anastasia G.
6. Holding Pencils Differently
When you have EDS, your joints may work differently than your typical peers. As a result, you might need to adapt activities for your body. Take holding a pencil, for example. If you’re prone to dislocations and experience chronic pain in your hands, it can be painful to learn the same grip as your classmates in grade school.
“I couldn’t hold a pencil correctly. I was told I had poor fine motor skills in second grade and was forced to correct it. Twenty years later I was diagnosed and learned it’s common for EDSers to use a modified grip. I still revert to my old grip sometimes.” — Jennie B.
7. Needing Extra Time to Avoid Injuries
If EDS causes symptoms like painful joint dislocations, you may need extra time to complete everyday activities your peers could do with ease. Whether it’s putting away your backpack more slowly than your friends or walking slowly to the lunchroom, you may have found yourself needing to do things differently to avoid dislocations or pain.
“Taking more time than others to do things and taking the extra time to learn how to do things without injury because of so much pain growing up [and] not knowing what it was from.” — Rachel L.