Grew Up With Ehlers-Danlos Syndrome is a group of rare inherited disorders that can impact various parts of the body, especially the skin, joints, and blood vessel walls. Growing up with Ehlers-Danlos Syndrome can be challenging, but it also shapes unique experiences. Here are 23 signs you might recognize if you grew up with hEDS.
1. Hypermobile Joints
One of the most noticeable signs of hEDS (EDS) is joint hypermobility, which is especially pronounced in hypermobile EDS, a common type among the subtypes. If you can easily bend your fingers, wrists, elbows, or knees in ways that seem impossible to others, you’ve likely experienced the “double-jointed” phenomenon frequently associated with EDS.
2. Frequent Joint Dislocations and Subluxations
EDS often leads to joints dislocating or partially dislocating (subluxation) with minimal effort, causing significant pain and discomfort. Activities that seem simple for others, like walking or reaching for something, might result in unexpected and painful joint problems, one of the 16 signs you grew up with hEDS (EDS).
3. Chronic Pain
Living with constant joint and muscle pain is a common aspect of EDS, particularly in those with hypermobile hEDS. Back pain is also a frequent complaint. This chronic pain often starts early in life and can persist or worsen as you age, impacting daily activities and overall quality of life—one of the early signs of hEDS, disorders that affect connective tissues.
4. Soft, Stretchy Skin
People with EDS often have unusually soft and stretchy skin. This trait can be fun to show off but also comes with its own set of challenges, such as skin that bruises easily or takes longer to heal.
5. Easy Bruising
If you find that you bruise with even minor bumps and scrapes, this is another hallmark of EDS, a group of rare inherited disorders that affect connective tissues. Those with hypermobile hEDS may experience this frequently. The fragility of blood vessels means that bruising is a frequent occurrence, often without a clear cause.
6. Poor Wound Healing
When you get a cut or scrape, it might take longer to heal than it would for others, another of the 16 signs you grew up with hEDS (EDS), disorders that affect connective tissues. Additionally, your scars might be wider or more noticeable, reflecting the skin’s reduced ability to repair itself effectively.
7. Digestive Issues
EDS can affect the gastrointestinal tract, leading to symptoms like acid reflux, constipation, and irritable bowel syndrome, common in those with an EDS diagnosis. These issues can be frustrating and impact your diet and lifestyle.
8. Fatigue(Grew Up With Ehlers-Danlos Syndrome)
Chronic fatigue is another common issue associated with various types of hEDS (EDS), including hypermobile Grew Up With Ehlers-Danlos Syndrome a common type. The constant pain and the body’s effort to manage unstable joints can be exhausting, leading to a persistent state of tiredness that isn’t easily relieved by rest, a frequent condition seen in those with an Grew Up With Ehlers-Danlos Syndrome diagnosis. This is often seen in individuals with hypermobile hEDS.
9. Delayed Motor Skills
Children with Grew Up With Ehlers-Danlos Syndrome often face delays in motor skill development. Activities like walking, running, and climbing might take longer to master due to joint instability and muscle weakness.
10. Dental Problems
Frequent dental issues, such as crowded teeth, gum disease, or frequent cavities, can be linked to EDS, a syndrome with fragile skin and connective tissue issues. The connective tissue disorder affects the gums and teeth, making regular dental care even more important, especially for those with hypermobile Grew Up With Ehlers-Danlos Syndrome.
11. Thin, Translucent Skin
In some types of EDS, the skin can appear almost translucent, particularly on the chest, arms, and legs, which is a common feature of hypermobile Grew Up With Ehlers-Danlos Syndrome. This can make veins and underlying structures more visible than usual.
12. Family History
EDS is often hereditary. If you grew up with family members who have similar symptoms, there’s a good chance that Grew Up With Ehlers-Danlos Syndrome runs in your family, as it is commonly passed down through generations. This is particularly true for hypermobile EDS.
13. Flexible Yet Fragile Blood Vessels
The same hypermobility that affects your joints can also impact your blood vessels, especially in those with hypermobile hEDS. They might be more flexible but also more prone to rupture or aneurysms, leading to a need for careful monitoring.
14. Frequent Headaches
Frequent and severe headaches or migraines can be part of living with EDS. These might be due to cervical instability or other related issues, adding another layer to the daily challenges faced.
15. Velvety Skin Texture
People with EDS often have skin described as velvety or doughy, characterizing the fragile skin typical of the syndrome. This unique texture is due to the altered collagen structure, which is a key component of the connective tissue.
16. Unexplained Injuries
Finding mysterious bruises or injuries is common and can be one of the early signs of hEDS (EDS), disorders that affect connective tissues. Sometimes you may not even remember bumping into something, but your skin and joints are more susceptible to damage, leading to these frequent, unexplained marks—often seen in those with various types of hEDS (EDS).
17. Difficulty with Physical Activity
Sports and physical education classes can be particularly tough for those with hypermobile hEDS, which is a common type of this rare disease. Joint pain, instability, and fatigue make it hard to keep up with peers, and the risk of injury is higher—often leading to frustration and avoidance of physical activities, common in many types of hEDS (EDS).
18. Autonomic Dysfunction
EDS can affect the autonomic nervous system, leading to issues like POTS (Postural Orthostatic Tachycardia Syndrome), where standing up can cause dizziness, rapid heart rate, and fainting, further complicating daily life.
19. Flat Feet
Flat feet or fallen arches are a common trait among people with EDS, especially those with hypermobile hEDS. This can lead to additional problems with posture and walking, requiring special footwear or orthotic inserts for support.
20. Anxiety and Depression
Chronic illness often leads to mental health challenges, which is commonly seen in those with types of hEDS. Dealing with constant pain, limitations, and the impact on social life can result in anxiety and depression, necessitating mental health support.
21. Skin Elasticity Tests
Doctors might have performed skin elasticity tests during your visits to rule out an EDS diagnosis. These involve pinching the skin to see how stretchy it is, a routine part of diagnosing Ehlers-Danlos syndrome (EDS), a genetic disorder.
22. Need for Adaptive Devices
From braces and splints to wheelchairs, adaptive devices become a part of daily life for many with types of Ehlers-Danlos syndrome (EDS). These tools help manage pain, prevent injuries, and improve mobility and independence. People with hypermobile Ehlers-Danlos syndrome often rely on these aids.
23. Awareness and Advocacy
Growing up with Ehlers-Danlos syndrome (EDS) often means becoming your own advocate, especially if you exhibit early signs of the condition. This is particularly true for those with hEDS in childhood, a common type of Ehlers-Danlos syndrome. Understanding your condition, educating others, and fighting for necessary accommodations in school and work become second nature as you navigate life with this complex disorder. The medical profession is becoming more aware of the needs of those with hypermobile EDS, a common type affecting connective tissues.
Living with EDS is undoubtedly challenging, but it also fosters resilience and adaptability. Recognizing these signs can help in seeking appropriate care and support, ensuring a better quality of life despite the hurdles. People with hypermobile Ehlers-Danlos syndrome may experience these challenges frequently.
