Were you the kid who often tripped, got bruised easily, had relentless pain while growing, and who seemed to collect bruises from just walking too close to furniture, struggled with aching pain while performing simple tasks, often called clumsy, but that can be the way your body is telling you something, showing signs of Ehlers-Danlos Syndrome?
In this blog, we will explore the 23 signs you grew up with Ehlers-Danlos Syndrome (EDS) and how to recognise them.
Understanding Ehlers-Danlos Syndrome (EDS)
Ehlers-Danlos syndrome (EDS) is a group of hereditary connective tissue disorders that manifests clinically with skin hyperelasticity, hypermobility of joints, atrophic scarring, and fragility of blood vessels.
Complications of Ehlers-Danlos Syndrome can include arterial and organ rupture, joint dislocations, chronic pain, and persistent fatigue, among others. Early and accurate diagnosis is crucial to managing symptoms, preventing severe complications, and improving the overall quality of life for those affected.
Also Read- Interventional Pain Management: Everything You Need to Know
23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS)
Several types of EDS may share some symptoms. These include:
| Sr. No. | Condition (Sign of EDS) | Tips to Manage the Condition |
| 1 | Hypermobility (Joints bend more than normal) | – Engage in low-impact exercises (swimming, cycling) to strengthen supporting muscles. – Use braces or tape for joint support during activities. – Work with a physical therapist to develop a stabilization program. |
| 2 | Chronic Pain | – Work with a pain management specialist for a comprehensive plan. – Explore gentle exercises, heat/cold therapy, and mindfulness techniques. – Consider physical therapy, occupational therapy, or massage. |
| 3 | Frequent Joint Dislocations/Subluxations | – Learn proper body mechanics to protect joints. – Strengthen muscles around vulnerable joints. – Consult with an orthopedist or physical therapist for joint-specific strategies. – Avoid “party tricks” or extreme range of motion. |
| 4 | Unexplained Bruises / Easy Bruising | – Be gentle with your skin; avoid harsh scrubbing. – Protect skin from bumps and trauma where possible. – Discuss with your doctor if bruising is severe or accompanied by other bleeding issues. |
| 5 | Soft, Stretchy Skin | – Keep skin well-moisturized to improve elasticity and prevent dryness. – Use gentle, fragrance-free skin products. – Avoid excessive sun exposure. |
| 6 | Constant Fatigue | – Prioritize consistent and adequate sleep (7-9 hours). – Pace activities to conserve energy; avoid overexertion. – Consult your doctor to rule out other causes of fatigue and discuss energy management strategies. |
| 7 | Poor Coordination & Balance Issues | – Work with a physical therapist for balance training and proprioceptive exercises. – Practice mindful movement and be aware of your surroundings to prevent falls. – Consider supportive footwear. |
| 8 | Heart Issues (Aortic Aneurysm, Valve Problems) | – Regular cardiovascular screening and follow-ups with a cardiologist. – Adhere strictly to any prescribed medications or lifestyle modifications. – Avoid activities that significantly raise blood pressure or strain the heart. |
| 9 | Digestive Problems (Reflux, Bloating, Constipation) | – Adopt a balanced diet, focusing on whole, unprocessed foods. – Stay well-hydrated. – Eat smaller, more frequent meals. – Consult a gastroenterologist for diagnosis and management of specific issues. |
| 10 | Loose Knees & Elbows | – Strengthen surrounding muscles to provide stability. – Avoid locking joints in extreme positions. – Use supportive aids like braces if recommended by a professional. |
| 11 | Delayed Milestones in Childhood | – Early intervention with physical and occupational therapy is crucial. – Encourage gentle, supervised play that builds strength and coordination. – Consult a pediatrician or developmental specialist. |
| 12 | Easy Scarring & Poor Wound Healing | – Practice meticulous wound care; keep wounds clean and covered. – Avoid unnecessary skin trauma. – Consult a doctor for significant wounds or those not healing well. |
| 13 | Frequent Dental Problems | – Regular dental check-ups and good oral hygiene are essential. – Inform your dentist about your EDS diagnosis. – Address issues like crowded teeth or gum fragility proactively. |
| 14 | Chronic Headaches | – Identify and avoid triggers (e.g., specific foods, stress, poor posture). – Explore relaxation techniques and stress management. – Consult a neurologist or headache specialist for diagnosis and treatment options. |
| 15 | Poor Posture | – Work with a physical therapist to improve core strength and body alignment. – Use ergonomic furniture and tools. – Practice regular stretching and strengthening exercises to support the spine. |
| 16 | Slow Wound Healing | – Keep wounds clean, moist, and protected. – Ensure adequate nutrition, especially protein and Vitamin C, which aid healing. – Follow medical advice for wound care to prevent infection and promote healing. |
| 17 | Sensory Processing Issues | – Identify specific sensitivities (e.g., bright lights, loud noises) and try to minimize exposure. – Create a calming environment when possible. – Consult with an occupational therapist specializing in sensory integration. |
| 18 | Dizziness When Standing (POTS Syndrome) | – Increase fluid and salt intake (under medical supervision). – Wear compression stockings. – Avoid standing for long periods; move slowly when changing positions. – Consult a cardiologist or neurologist specializing in autonomic disorders. |
| 19 | Poor Hand Strength | – Engage in hand-strengthening exercises (e.g., using therapy putty, squeezing a soft ball). – Use adaptive tools for tasks like opening jars or cutting. – Consult an occupational therapist for personalized strategies. |
| 20 | Feeling Different from Peers | – Seek support groups or online communities for people with EDS. – Educate friends and family about your condition to foster understanding. – Focus on your strengths and unique qualities; connect with others who share your interests. |
| 21 | Excessive Sensitivity to Temperature | – Dress in layers to adjust easily to temperature changes. – Avoid extreme temperatures where possible. – Stay well-hydrated. – Discuss with your doctor if regulation issues are severe. |
| 22 | Sleep Disturbance | – Establish a consistent sleep schedule and create a relaxing bedtime routine. – Address potential obstructive sleep apnea (OSA) with a sleep specialist. – Ensure a comfortable sleeping environment. – Avoid caffeine and heavy meals before bed. |
| 23 | Chronic Nosebleeds | – Avoid picking or blowing your nose forcefully. – Use a humidifier to keep nasal passages moist. – Apply gentle pressure to the nose during a bleed. – Consult an ENT specialist if nosebleeds are frequent or severe. |
1. When Flexibility Becomes a Challenge
Hypermobility is the most common type of EDS. Many children can do what many call “party tricks” with their hypermobile joints. It often leads to joint pain, frequent dislocation or subluxation, leading to early osteoarthritis and chronic pain.
2. Chronic Pain
The instability of joints can cause chronic pain, which is one of the most common symptoms of EDS.
3. Frequent Joint Dislocations
Frequent dislocation or subluxation, or partial dislocation, can cause pain. Happens mainly in the knees, shoulders and hips
4. Unexplained Bruises
Due to EDS, your skin tends to be fragile, which takes time for bruises to heal.
5. Soft, Stretchy Skin
Stretchy skin is a well-known symptom that is not often seen in many people who have EDS which is easily stretchable and immediately returns to its original state after release.
6. Constant Fatigue
As your body stays busy healing, scarring, wounds and muscles that many a time you may feel constant fatigue even doing a minimal task.
7. Poor Coordination & Balance Issues
You may be called clumsy because you tend to stubble upon nothing and randomly, that might be your EDS, which makes it hard to balance and tends to have poor coordination.
8. Heart Issues
A rare type of EDS can be the cause of many heart-related issues, such as an Aortic Aneurysm (a bulge in the aorta’s wall) and heart valve problems. Cardiovascular screening should be done regularly to mitigate risk factors as best as possible.
9. Digestive Problems
EDS leads to digestive problems like acid reflux, bloating, constipation, or nausea
10. Loose Knees & Elbows
Your elbows and knees may bend more than normal without immediate pain, but sharp discomfort or soreness often follows later.
11. Delayed Milestones in Childhood
Some parents might get worried as their child takes time to crawl or walk, but that can be one of the signs of EDS, as it leads to muscle weakness and joint instability.
12. Easy Scarring & Poor Wound Healing
In eds fragile skin is common, which often causes scarring and poor wound healing. Many times re-opening of wounds can be observed
13. Frequent Dental Problems
Dental problems are common in EDS such as hypodontia of permanent teeth, delayed eruption, and dentin dysplasia. Hence, dentists have a crucial role in early diagnosis.
14. Chronic Headaches
Chronic headaches are most common in EDS and can often cause migraines or tension headaches may result from muscle tightness and joint strain.
15. Poor Posture
Joint hypermobility and muscle weakness in people with EDS can contribute to poor posture, often resulting in back pain and related problems.
16. Slow Wound Healing
Because their skin is fragile, people with EDS often face delayed or poor wound healing, causing even minor cuts and bruises to take longer to heal.
17. Sensory Processing Issues
Children with EDS may also have sensory processing difficulties, making them more sensitive to touch, sounds, and light.
18. Dizziness When Standing (POTS Syndrome)
Patients with POTS often seek medical attention for symptoms such as palpitations, dizziness, or fainting.
While some “POTS attacks” are triggered by factors like standing up quickly or infections, others may occur without any clear cause.
19. Poor Hand Strength
As a child, did you find it hard to hold a pen, use scissors, or open jars? EDS can make hand muscles weaker, making these everyday tasks more challenging.
20. Feeling Different from Peers
Living with EDS from a young age can sometimes feel isolating, as others may not see or understand the challenges you face each day.
21. Excessive Sensitivity to Temperature
You may notice feeling unusually hot or cold compared to others, as many with EDS experience difficulties regulating their body’s temperature.
22. Sleep disturbance
Sleep disturbance and sleep-disordered breathing, termed genetic obstructive sleep apnea (OSA), have a known association with EDS, leading to fatigue and other issues.
23. Chronic Nosebleeds
In EDS, blood vessel walls can be fragile, so even small bumps or injuries may cause unexpected bleeding or ruptures.
Also Read- Cell Therapy (Stem Cell): The Future of Medicine Explained Simply
Management of Ehlers-Danlos Syndrome (EDS)
Understanding the 23 Signs You Grew Up with Ehlers-Danlos Syndrome (EDS) is just the first step—effective management requires a comprehensive, multidisciplinary approach tailored to your specific symptoms and EDS type. Whilst there’s currently no cure for EDS, proper management can significantly improve quality of life, reduce complications, and help individuals live active, fulfilling lives despite the challenges.
Medical Management and Monitoring
Regular medical supervision forms the cornerstone of EDS management. If you’ve recognised multiple signs from the 23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS), establishing care with specialists experienced in connective tissue disorders is crucial. This typically includes geneticists for diagnosis confirmation, rheumatologists for joint management, cardiologists for cardiovascular monitoring (particularly in vascular EDS), and gastroenterologists for digestive complications.
Pain management often requires a multimodal approach combining medications, physical interventions, and psychological support. Many individuals with EDS benefit from low-dose analgesics, nerve pain medications, and targeted injections for specific joint issues. However, it’s important to note that people with EDS may have unusual responses to medications and anaesthesia, so always inform healthcare providers about your diagnosis.
Physical and Occupational Therapy
Physical therapy specifically designed for EDS focuses on strengthening the muscles surrounding hypermobile joints rather than increasing flexibility. This “closed-chain” strengthening approach helps stabilise joints and reduce dislocation frequency—addressing one of the most common concerns in the 23 signs you grew up with Ehlers-Danlos Syndrome (EDS). Low-impact activities like swimming, cycling, and yoga (with modifications) can maintain fitness without overstressing fragile joints.
Occupational therapy teaches energy conservation techniques, proper body mechanics, and introduces adaptive equipment that makes daily tasks easier. Simple modifications—ergonomic tools, jar openers, adaptive utensils—can dramatically reduce joint strain and fatigue, two prevalent signs amongst the 23 signs you grew up with Ehlers-Danlos Syndrome (EDS).
Lifestyle Adaptations
Living with EDS requires thoughtful lifestyle adjustments. Joint protection through braces, splints, or kinesiology tape during activities helps prevent injuries. Pacing activities with regular rest breaks prevents the debilitating fatigue many experience. Maintaining a balanced, anti-inflammatory diet rich in protein, omega-3 fatty acids, and adequate hydration supports tissue health and may reduce symptom severity.
Psychological and Emotional Support
The invisible nature of many symptoms in the 23 signs you grew up withEhlers-Danlos Syndrome (EDS) can lead to feelings of isolation, anxiety, and depression. Mental health support through counselling, support groups, and connecting with others who understand EDS is as important as physical management. Many individuals find validation and practical advice through online EDS communities and patient advocacy organisations.
Also Read- Acute Pericarditis | Causes, Symptoms & Recovery Timeline
Types of Ehlers-Danlos Syndrome (EDS)
Recognising the 23 signs you grew up with Ehlers-Danlos Syndrome (EDS) is important, but understanding that EDS comprises 13 distinct subtypes—each with unique characteristics, inheritance patterns, and complications—helps explain why experiences vary so widely amongst individuals with the condition.
Hypermobile EDS (hEDS) – The Most Common Type
Hypermobile EDS accounts for approximately 90% of all EDS diagnoses and is characterised primarily by joint hypermobility, chronic pain, and soft, slightly stretchy skin.
Classical EDS (cEDS) – Marked by Skin Involvement
Classical EDS features significant skin hyperextensibility, atrophic scarring (particularly over pressure points like knees and elbows), and joint hypermobility.
Vascular EDS (vEDS) – The Most Serious Type
Vascular EDS is the most severe and life-threatening subtype, characterised by fragile blood vessels and organs prone to rupture.
Other EDS Subtypes
The remaining EDS types include Kyphoscoliotic EDS (characterised by severe muscle weakness and progressive spinal curvature), Arthrochalasia EDS (featuring severe joint hypermobility and congenital hip dislocation), Dermatosparaxis EDS (marked by extremely fragile, sagging skin), and several other rare forms. Each presents unique combinations of the 23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS) with varying severity and specific complications.
Also read: Does Rheumatoid Arthritis Cause Sun Sensitivity?
The Importance of Accurate Diagnosis
Identifying which EDS type you have is crucial because management strategies, screening recommendations, and prognosis differ significantly. If you’ve identified with multiple signs from the 23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS), genetic testing and evaluation by an EDS specialist can confirm your specific diagnosis and guide appropriate medical surveillance and treatment approaches.
5 FAQs on Ehlers-Danlos Syndrome (EDS)
1. How many of the Signs of Ehlers-Danlos Syndrome (EDS) do I need to have for a diagnosis?
Ans. You don’t need to experience all 23 signs you grew up with Ehlers-Danlos Syndrome (EDS) to warrant investigation for the condition. EDS diagnosis varies by subtype and is based on specific clinical criteria rather than a simple checklist. For hypermobile EDS, the most common type, diagnosis requires generalised joint hypermobility plus additional features like chronic pain, family history, and associated conditions. If you recognise five or more signs, particularly if they include joint hypermobility, chronic pain, and skin manifestations, consult a geneticist or rheumatologist experienced in connective tissue disorders.
2. Can the 23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS) change or worsen over time?
Ans. Yes, many individuals find that the 23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS) evolve throughout their lifetime. Some symptoms, like hypermobility and “party tricks,” may be more noticeable in childhood and adolescence, whilst chronic pain, fatigue, and joint instability often worsen with age.
3. Are all 23 Signs You Grew Up with Ehlers-Danlos Syndrome (EDS) present in every type of EDS?
Ans. No, the 23 Signs You Grew Up with Ehlers-Danlos Syndrome (EDS) vary considerably depending on which of the 13 EDS subtypes you have. Hypermobile EDS typically presents with the broadest range of these signs, including joint hypermobility, chronic pain, fatigue, POTS, and digestive issues.
4. Can children show the 23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS), and when should parents be concerned?
Ans. Children absolutely can display many of the 23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS), and early recognition is beneficial for proper support and management. Red flags include delayed motor milestones (late walking or frequent falls), excessive joint flexibility that seems to cause pain rather than just being “double-jointed,” easy bruising that raises concerns at nursery or school, chronic complaints of growing pains, poor handwriting due to hand weakness, and frequent injuries or joint dislocations. If there’s a family history of hypermobility or chronic pain, consult your general physician for referral to appropriate specialists.
5. Where can I find support if I identify with the 23 Signs You Grew Up with Ehlers-Danlos Syndrome (EDS)?
Ans. If you recognise yourself in the 23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS), you’re not alone, and substantial support networks exist. Start by seeking medical evaluation from specialists experienced in EDS—geneticists, rheumatologists, or specialised EDS clinics can provide diagnosis and management guidance. Organisations like the Ehlers-Danlos Support UK, The Ehlers-Danlos Society (international), and EDS UK offer evidence-based information, connect you with support groups, and provide resources for living with EDS. Online communities through Facebook groups, Reddit’s r/ehlersdanlos, and patient forums allow you to connect with others who genuinely understand the challenges of living with the 23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS). Many individuals find that connecting with others who share similar experiences provides validation, practical coping strategies, and emotional support that complements medical management—remember, seeking support is a sign of strength, not weakness.
Also Explore-
– Best strategy for avoiding chronic diseases | Avoid high-calorie diet
– Do Conjoined Twins Have the Same Allergies? | Shared Immunity
References
- Ehlers-Danlos Syndrome – StatPearls – NCBI Bookshelf
- Living a restricted life with Ehlers-Danlos Syndrome (EDS) – ScienceDirect
- Skin signs in Ehlers–Danlos syndrome: clinical tests and para-clinical methods: Scandinavian Journal of Rheumatology: Vol 39, No 6
- JCR: Journal of Clinical Rheumatology