16 Signs You Grew Up With Ehlers-Danlos Syndrome
Article updated Feb. 19, 2020.
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 isn’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. We asked our Mighty community to share signs that they grew up with Ehlers-Danlos syndrome, which they can now recognize in retrospect. 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.
8. Being Told You Have ‘Growing Pains’
It’s not uncommon for kids with chronic pain to have their symptoms dismissed as “growing pains.” When you live with a chronic illness like EDS, however, that pain is real and not “just” a side effect of growing up. “The main problem people have is joint pain. That’s really the biggest issue,” Atwal said.
“Constantly being diagnosed with ‘growing pains.’” — Kalee E.
9. Hearing ‘Jokes’ About Your Symptoms
At one time, your ability to do a contortionist “trick” may have been easy to write off as a “joke” or something to laugh about. In reality, though, flexibility or joint popping was an EDS symptom. It’s partly why some people have such difficulty getting an EDS diagnosis — it can take time to put together that your symptoms are really Ehlers-Danlos.
“I was always spraining my ankles. I was always able to freak people out with the way my body contorted, and I thought it was so funny. I wish it was as funny now as it was then.” — Cara S.
“My parents used to joke that they could fold me up and put me in a suitcase. I was always underweight, had frequent nausea and low appetite. I was easily fatigued, and my fingers would hurt when folding laundry.” — Caroline M.
10. Getting Teased for Being ‘Clumsy’
Ending up with a string of injuries, especially just participating in typical kid activities like running around the playground, may have landed you a reputation for clumsiness as a child. In reality, those dislocations or sprains, unexpected bruises, and slow-healing wounds pointed to an EDS diagnosis.
“I was labeled a ‘clumsy child’ and teasingly called grace. I always had something sprained, mostly my ankles. I had broken all my fingers several times and dislocated joints daily. Because of all of this I started to carry Ace bandages of varying sizes with me at all times just in case. I still carry three or four when I leave the house and have dozens of different types of braces for all different parts.” — Kaylla S.
11. Adapting Activities to Avoid Pain
Ehlers-Danlos can be an invisible illness or disability — people can’t immediately tell that you struggle with symptoms in your day-to-day life like joint dislocations and subluxations or chronic pain. Growing up, you may have found yourself compensating by finding ways to adapt activities so you don’t get hurt.
“I go up and down the stairs more or less sideways. It stops my knees hurting so much but I didn’t really notice it until someone pointed out that your knees aren’t supposed to hurt or go backwards.” — Majesta-Doré L.
12. Being More Susceptible to Illness
Connective tissue is everywhere in your body, so the differences caused by EDS can lead to a wide array of symptoms beyond just your joints. For example, people diagnosed with EDS may experience gastrointestinal issues, migraine, postural orthostatic tachycardia syndrome (POTS), chronic pain, fatigue and vision issues, among many others.
“I constantly had GI issues and a weakened immune system, and I was getting injured so often. I always thought I was just clumsy and more susceptible to illness, until I got my EDS diagnosis.” — Hannah H.
13. Experiencing Chronic Pain at a Young Age
People often face the stereotype that chronic pain or chronic illness only affects older people — think the dreaded phrase, “You’re too young to be sick.” If you were questioned for showing up at the doctor’s office with pain typically associated with adults seven decades older than you, it may have been a sign of EDS.
“[I remember] my mother taking me to the doctor at 8 for neck and back pain issues. I remember her saying, ‘What 8-year-old has neck and back pain?’ I felt old.” — Lisa P.
14. Running With a Different Gait
Running in gym class is a hallmark of school, like it or not. It’s a high-impact exercise that requires several joints, from your hips down to your ankles. You or others may have noticed your running gait is different than other kids because of how EDS affects your joints.
“[A] P.E. teacher mocked the way I ran when he forced me to do cross-country training. Turns out I ran like that because my hips/knees hyper-extend.”
15. Wearing Particular Clothing
EDS can cause chronic pain and you may find your skin is fragile or sensitive. Like other kids with invisible illnesses, disabilities or sensory sensitivities, you might have been picky about the clothing you wear, reaching for only the softest, most comfortable items to avoid pain and discomfort.
“Constant tiredness, ‘growing pains,’ bruising and splitting the skin on my knees all the time, only wanting to wear ‘comfy’ clothes (the softest materials I could find) and being born with severe bilateral hip dysplasia.” — Emily R.
16. Comparing Your Joints to Other Kids
You may have reached a point where you noticed you (and your limbs) seemed to work a little differently than your friends. The natural thing kids do is compare. Can other kids bend their fingers all the way back? Do my classmates also dislocate their shoulder every time they pick up their book bag? If you had EDS but didn’t know it, you might relate.
“When you have to ask other kids how your knees and elbows are supposed to bend.” — Katie F.
If you live with Ehlers-Danlos syndrome, know you’re not alone. While the condition doesn’t have a cure, with the right treatments and support, you can manage many of your symptoms, whether that’s through braces and exercise programs or medications and diet changes. And you can connect with a community that cares on The Mighty by posting on the site using the hashtag #EhlersDanlosSyndrome or #EDS.
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