Growing up with Ehlers-Danlos Syndrome (EDS) can be a unique and challenging experience. This rare genetic disorder affects the body’s connective tissues, which provide structure and support to various organs, including the skin, joints, and blood vessels. While the symptoms can vary in severity, many individuals who grew up with EDS often share common experiences and telltale signs.
What Is Ehlers-danlos Syndrome?
Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that affect the body’s connective tissue, which provides support and structure to various organs, skin, and other tissues. The condition is characterized by overly flexible joints, stretchy skin, and abnormal scar formation.
Types
- Classical EDS (cEDS): characterized by skin hyperextensibility, joint hypermobility, and tissue fragility
- Vascular EDS (vEDS): characterized by fragile blood vessels and a high risk of rupture
- Hypermobility EDS (hEDS): characterized by joint hypermobility and chronic pain, but without the risk of organ rupture
Causes
Genetic mutations that affect the production or structure of collagen, a protein that provides strength and structure to connective tissue
23 Signs That May Indicate You Grew Up With Ehlers-danlos Syndrome
Hypermobile Joints
One of the most recognizable signs of EDS is joint hypermobility, often described as being “double-jointed.” As a child, you may have been able to perform party tricks like bending your fingers backward or hyperextending your elbows and knees beyond their typical range.
Frequent Dislocations And Subluxations
Due to the instability of hypermobile joints, individuals with EDS often experience frequent dislocations (when a joint completely comes out of place) and subluxations (partial dislocations). As a child, you may have experienced your joints popping out of place, particularly in areas like the shoulders, knees, and hips.
Chronic Joint Pain
The constant strain on hypermobile and unstable joints can lead to chronic joint pain from an early age. You may have experienced persistent aches and pains in your joints, even without any obvious injury or trauma.
Easy Bruising And Fragile Skin
People with EDS often have delicate skin that bruises easily. As a child, you may have noticed that even minor bumps or scratches could result in significant bruising or tearing of your skin.
Poor Wound Healing
In addition to fragile skin, individuals with EDS may experience poor wound healing. Cuts, scrapes, and other injuries may have taken longer than usual to heal, and you may have been prone to developing abnormal scarring.
Muscle Weakness And Fatigue
Muscle weakness and chronic fatigue are common symptoms of EDS. As a child, you may have struggled with activities that required physical exertion or endurance, and you may have felt tired more easily than your peers.
Digestive Issues
EDS can affect the digestive system, leading to issues like constipation, bloating, and food sensitivities. You may have experienced frequent stomach aches, nausea, or other gastrointestinal problems from a young age.
Clumsiness And Poor Balance
Due to the combination of joint hypermobility, muscle weakness, and potential proprioceptive issues (the ability to sense the position and movement of your body), individuals with EDS often experience clumsiness and poor balance. As a child, you may have been prone to frequent falls or stumbles.
Delayed Milestones
Children with EDS may experience delays in reaching developmental milestones, such as crawling, walking, or running, due to the challenges posed by joint instability and muscle weakness.
Dental Issues
EDS can affect the structure of the teeth and jaw, leading to dental issues like overcrowding, misalignment, or weak enamel. You may have had frequent dental problems or required orthodontic treatment from a young age.
Sensory Processing Issues
Some individuals with EDS may experience sensory processing issues, such as heightened sensitivity to touch, sound, or light. As a child, you may have been overwhelmed by certain sensory stimuli or struggled with clothing textures or tags.
Anxiety And Depression
Living with a chronic condition like EDS can take an emotional toll, and many individuals with EDS experience anxiety and depression from a young age. You may have felt overwhelmed or struggled with mental health challenges as a child.
Difficulty With Physical Activities
Participating in physical activities and sports can be challenging for individuals with EDS due to the risk of injury, joint instability, and muscle weakness. You may have avoided or struggled with physical education classes or team sports as a child.
Chronic Headaches And Migraines
Chronic headaches and migraines are common in individuals with EDS, often caused by muscle tension or joint issues. You may have experienced frequent headaches or migraines from a young age.
Sleep Disturbances
Chronic pain, joint instability, and other symptoms of EDS can make it difficult to get a good night’s sleep. As a child, you may have experienced insomnia, restless sleep, or difficulty finding a comfortable sleeping position.
Dizziness And Fainting
Some individuals with EDS may experience episodes of dizziness, lightheadedness, or fainting, particularly when standing up quickly. These symptoms can be related to issues with autonomic nervous system function, which can be common in EDS.
Difficulty With Fine Motor Skills
The joint hypermobility and muscle weakness associated with EDS can make it challenging to perform tasks that require fine motor skills, such as writing, tying shoelaces, or manipulating small objects. You may have struggled with these activities as a child.
Feeling “Different” From Peers
Growing up with a chronic condition like EDS can make you feel different from your peers, particularly if your symptoms are not well understood or recognized. You may have felt isolated or struggled to find others who could relate to your experiences.
Clicking Or Popping Joints
Due to the instability and hypermobility of joints in EDS, you may have experienced frequent clicking, popping, or grinding sounds from your joints, particularly during movement or physical activity.
Holding Pens Or Pencils Differently
To avoid pain or discomfort caused by joint hypermobility, individuals with EDS often develop unique ways of holding or gripping objects like pens, pencils, or utensils. You may have held writing instruments in an unconventional manner as a child.
Chronic Fatigue
The constant effort required to stabilize joints and compensate for muscle weakness in EDS can lead to chronic fatigue. You may have felt constantly tired or drained as a child, even after getting adequate sleep.
Fear Of Relaxing Joints
Due to the risk of dislocations and subluxations, some individuals with EDS may develop a fear or hesitancy to relax or fully extend their joints. You may have been cautious or apprehensive about certain movements or positions as a child.
Atypical Movement Patterns
To compensate for joint instability and muscle weakness, individuals with EDS may develop atypical or unique movement patterns, such as an unusual gait or posture. You may have walked, ran, or moved in a way that seemed different from your peers.
Treatment
- Supportive care, such as physical therapy and pain management
- Avoiding activities that put excessive stress on joints
- Wearing protective gear, such as knee and elbow pads, to prevent injury
- Avoiding certain medications that can exacerbate symptoms
- Surgery may be necessary in some cases to repair damaged tissues or organs.
Sum Up
If you experienced several of these signs during your childhood, it may be an indication that you grew up with Ehlers-Danlos Syndrome. However, it’s important to note that not all individuals with EDS will experience all of these signs, and the severity and presentation of symptoms can vary greatly.
If you suspect you may have EDS, it’s essential to consult with a healthcare professional, such as a geneticist or a rheumatologist, for a proper evaluation and diagnosis. Early recognition and management of EDS can help individuals develop coping strategies and access appropriate support and resources to improve their overall quality of life.
While growing up with EDS can be challenging, it’s important to remember that you are not alone. Connecting with others who share similar experiences and seeking support from healthcare professionals and support groups can make a significant difference in managing the condition and promoting overall well-being.
