23 Signs You Grew Up With Ehlers Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a group of rare genetic disorders that affect the connective tissue in the body. Connective tissue provides support, strength, and elasticity to various structures, including the skin, joints, blood vessels, and organs. EDS can impact these tissues, resulting in a range of symptoms and complications.

23 Signs You Grew Up With Ehlers Danlos Syndrome

Some common signs and experiences that individuals with EDS may have encountered during their childhood and adolescence. It’s important to note that these experiences can vary among individuals and across different subtypes of EDS.

Here are 23 signs that you may have grown up with Ehlers-Danlos Syndrome:

1. Frequent Joint Dislocations Or Subluxations: EDS can cause unstable joints, leading to frequent joint dislocations or partial dislocations (subluxations).
2. Hypermobile Joints: Excessive joint flexibility, often referred to as being “double-jointed,” is a common feature of EDS.
3. Chronic Joint Or Muscle Pain: EDS can cause persistent pain in the joints and muscles, which may affect daily activities.
4. Stretchy Or Fragile Skin: The skin in individuals with EDS may be elastic and stretchy, with increased vulnerability to tearing or bruising.
5. Easy Scarring: Even small injuries can result in noticeable or exaggerated scars.
6. Joint Clicking Or Popping: Joint movements may be accompanied by clicking or popping sounds.
7. Early-Onset Osteoarthritis: The joints affected by EDS can wear down more quickly, leading to early-onset osteoarthritis.
8. Delayed Motor Skills Development: Children with EDS may experience delays in acquiring motor skills such as crawling or walking.
9. Delayed Speech Development: Some children with EDS may have delayed speech development or difficulty with articulation.
10. Gastrointestinal Issues: EDS can affect the gastrointestinal system, leading to problems such as chronic constipation, acid reflux, or irritable bowel syndrome.
11. Chronic Fatigue: EDS can cause persistent fatigue and low energy levels.
12. Fragile Blood Vessels: In rare cases of vascular EDS, blood vessels can be fragile and prone to rupture, leading to potentially life-threatening complications.
13. Mitral Valve Prolapse: Some individuals with EDS may have mitral valve prolapse, a condition where the valve between the heart’s chambers doesn’t close properly.
14. Scoliosis Or Kyphosis: Abnormal curvature of the spine, such as scoliosis or kyphosis, may be present in individuals with EDS.
15. Clubfoot Or Flat Feet: EDS can cause abnormalities in foot structure, such as clubfoot or flat feet.
16. Poor Coordination Or Balance: Difficulties with coordination and balance may be present due to unstable joints and decreased proprioception.
17. Skin Sensitivity Or Allergies: Some individuals with EDS may have increased sensitivity to certain fabrics, fragrances, or skin products.
18. Dental Issues: EDS can be associated with dental problems like crowded teeth, enamel abnormalities, or temporomandibular joint (TMJ) dysfunction.
19. Autonomic Dysfunction: Autonomic dysfunction, such as postural orthostatic tachycardia syndrome (POTS), may be present in individuals with EDS, leading to symptoms like dizziness and light-headedness upon standing.
20. Easy Bruising: Fragile blood vessels can lead to frequent or easy bruising.
21. Delayed Wound Healing: Wounds may take longer to heal in individuals with EDS.
22. Anxiety Or Depression: Living with a chronic condition like EDS can contribute to feelings of anxiety or depression.
23. Family History Of EDS: EDS is often inherited, so having other family members with the condition may be a common experience.

Types of Ehlers-Danlos Syndrome

There are several different types of Ehlers-Danlos Syndrome (EDS). The commonly recognized types include:

1. Classical Ehlers-Danlos Syndrome (cEDS): Characterized by skin that is smooth, stretchy, and fragile, with joint hypermobility and increased risk of joint dislocations.

2. Hypermobile Ehlers-Danlos Syndrome (hEDS): Features include joint hypermobility, chronic joint pain, and soft, velvety skin that can be easily bruised.

3. Vascular Ehlers-Danlos Syndrome (vEDS): This type is characterized by fragile blood vessels, thin skin prone to rupture, increased risk of organ and artery ruptures, and potentially life-threatening complications.

4. Kyphoscoliotic Ehlers-Danlos Syndrome (kEDS): It typically involves severe curvature of the spine (kyphoscoliosis) and can also present with joint hypermobility and fragile skin.

5. Arthrochalasia Ehlers-Danlos Syndrome (aEDS): Includes severe joint hypermobility, recurrent joint dislocations, and congenital hip dislocation.

6. Dermatosparaxis Ehlers-Danlos Syndrome (dEDS): It is characterized by extremely fragile skin, sagging or redundant skin, and joint laxity.

7. Brittle Cornea Syndrome (BCS): It primarily affects the eyes, leading to thinning and fragility of the cornea, as well as joint hypermobility.

8. Cardiac-valvular Ehlers-Danlos Syndrome (cvEDS): It primarily affects the heart valves, leading to valve conditions and arterial issues.

It is important to note that these are just some of the recognized types of EDS, and there can be overlap and variations within each subtype. Genetic testing is often needed for an accurate diagnosis and classification of EDS type.

Treatment for Ehlers-Danlos Syndromes

Treatment for Ehlers-Danlos Syndrome (EDS) focuses on managing symptoms, preventing complications, and improving quality of life. As each subtype of EDS can vary in presentation and severity, treatment plans may be tailored to the individual’s specific symptoms and needs. Here are some common approaches to managing EDS:

1. Physical therapy: Physical therapy plays a crucial role in strengthening muscles, improving joint stability, and enhancing functional abilities. It may involve exercises to improve posture, joint protection techniques, and pain management strategies.

2. Pain management: Chronic pain is a common symptom of EDS. Pain management strategies may include nonsteroidal anti-inflammatory drugs (NSAIDs), physical modalities (such as heat or cold therapy), and alternative therapies like acupuncture or transcutaneous electrical nerve stimulation (TENS).

3. Orthopedic interventions: Bracing, splinting, or taping techniques may be employed to provide additional support to unstable joints and prevent excessive movement or dislocations.

4. Medications: In some cases, medications such as muscle relaxants or low-dose antidepressants may be prescribed to manage pain, muscle spasms, or associated psychological symptoms, such as anxiety or depression.

5. Cardiovascular monitoring: In individuals with vascular EDS, regular cardiovascular monitoring is essential to detect and manage any potential vascular complications. This may include regular check-ups, imaging studies, and collaboration with specialists like cardiologists or vascular surgeons.

6. Skin care: Proper skin care is important for individuals with EDS, as they may have fragile or stretchy skin. It involves using gentle skincare products, avoiding excessive sun exposure, and taking precautions to prevent skin injuries.

7. Gastrointestinal management: For individuals with gastrointestinal issues, managing symptoms may involve dietary modifications, medications for symptom control (such as laxatives or acid reflux medications), and working closely with a gastroenterologist or nutritionist.

8. Psychological support: Living with a chronic condition like EDS can have a significant psychological impact. It is important to address psychological symptoms such as anxiety or depression through therapy, counseling, or support groups.

9. Education and self-management: Learning about EDS, understanding individual limitations, and developing self-management strategies are essential. This may involve learning proper body mechanics, pacing activities, and recognizing and managing early signs of complications.

It is important to work closely with a healthcare team that specializes in EDS to develop an individualized treatment plan based on the specific subtype and symptoms experienced by the individual. Regular follow-ups and open communication with healthcare professionals are crucial