Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that often go unnoticed during childhood. If you’ve spent your life facing unexplained injuries, joint dislocations, or skin issues, it’s possible you grew up with Ehlers-Danlos Syndrome. This genetic condition can be incredibly challenging to live with, and it often takes years to receive a proper diagnosis. But understanding the signs can help you manage symptoms and get the support you need.
In this article, we’ll explore the 23 signs you grew up with Ehlers-Danlos Syndrome and how it affects daily life. Whether you’re seeking answers for yourself or a loved one, these signs can help you understand what to look for.
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome is a genetic disorder that impacts the body’s connective tissues, which support the skin, blood vessels, bones, and organs. There are different types of EDS, each affecting the body in different ways, but all share common symptoms related to hypermobility, skin elasticity, and tissue fragility.
EDS often goes undiagnosed during childhood, as its symptoms can be easily mistaken for other conditions. People who grow up with this condition may learn to adapt to challenges, making it harder to pinpoint the root cause.
EDS is a genetic condition affecting collagen production, leading to hypermobile joints, stretchy skin, and fragile tissues. There are 13 recognized types, each with its own set of symptoms and severity levels. The most common type is hypermobile EDS (hEDS), but others include classical, vascular, and kyphoscoliotic EDS
23 Signs You Grew Up with Ehlers-Danlos Syndrome
1. Hypermobile Joints
Your joints seem to move beyond the normal range, and you might frequently experience dislocations or subluxations (partial dislocations).
2. Chronic Joint Pain
If you’ve had ongoing joint pain or discomfort since childhood, this could be a sign of EDS. The pain is often a result of weakened connective tissue in the joints.
3. Easy Bruising
People with EDS often bruise easily because their blood vessels and skin are more fragile than usual.
4. Stretchy Skin
The skin of people with EDS is often more elastic than normal, stretching further without tearing, but it may also be more fragile.
5. Frequent Scarring or Scars That Don’t Heal Properly
Scars from cuts or abrasions tend to take longer to heal and may form poorly due to weak collagen production in the skin.
6. Painful, Excessive Scarring
In addition to poor healing, scars can be wider, raised, or more pronounced, which may lead to discomfort or cosmetic concerns.
7. Skin That’s Delicate and Thin
The skin may feel unusually soft and delicate, making it prone to tears or rips.
8. Frequent Sprains or Strains
Joint hypermobility leads to an increased risk of sprains and strains, especially during physical activity or even minor movements.
9. Fatigue
Due to the body’s inability to support its joints properly, people with EDS often experience chronic fatigue.
10. Digestive Problems
Many individuals with EDS suffer from gastrointestinal issues, such as irritable bowel syndrome (IBS), bloating, and constipation.
11. Headaches or Migraines
People with EDS frequently experience tension headaches or migraines, likely due to muscle tension caused by joint instability.
12. Early-Onset Arthritis
Joint instability in EDS can lead to early-onset arthritis, even in children or young adults, resulting in pain and reduced mobility.
13. Heart Issues
EDS can affect the blood vessels, sometimes causing heart murmurs or problems with blood pressure.
14. Vision Issues
Some types of EDS can cause eye problems, including extreme nearsightedness (myopia) or retinal problems, making vision difficult.
15. Poor Wound Healing
Wounds from cuts or surgery take much longer to heal, and they may reopen easily due to fragile skin.
16. Scoliosis
A noticeable curve in the spine (scoliosis) may develop in individuals with EDS due to weakened connective tissues supporting the spine.
17. Easy Fatigue After Physical Activity
Despite not appearing overly tired, people with EDS often feel drained after minimal physical activity due to weakened connective tissue.
18. Orthostatic Intolerance (Dizziness When Standing)
Feeling dizzy or faint when standing up quickly can be a sign of EDS, as blood vessels may not function optimally.
19. Muscle Weakness
Because of joint instability, people with EDS may experience weakness in their muscles, particularly around hypermobile joints.
20. Tendency to Develop Cellulite or Lumps in Skin
EDS may cause unusual skin textures, such as cellulite or small lumps under the skin.
21. Anxiety or Depression
The constant physical challenges and chronic pain can sometimes lead to mental health struggles, including anxiety or depression.
22. Difficulty with Balance
Due to joint instability, maintaining balance may be more difficult, especially in challenging or dynamic environments.
23. Unexplained Pain After Minimal Activity
Even mild physical activity can result in unexplainable pain, swelling, or discomfort, a hallmark sign of connective tissue disorders like EDS.
How to Manage Ehlers-Danlos Syndrome: Tips for Living with EDS
Living with EDS requires adopting specific strategies to manage symptoms and improve quality of life. Here are some tips to help you thrive:
- Physical Therapy: Working with a physical therapist can help strengthen the muscles around your joints and improve stability.
- Pain Management: Over-the-counter pain relievers or prescribed medications can help manage chronic pain.
- Protective Measures: Use knee braces or wrist splints to prevent joint dislocations during daily activities.
- Hydration & Nutrition: Ensure you’re eating a balanced diet to support overall joint and skin health, along with staying hydrated.
- Mental Health Support: It’s essential to seek mental health support, as dealing with chronic pain can take a toll emotionally.
Conclusion: Embrace Your Journey with Ehlers-Danlos Syndrome
If you recognize these 23 signs, it may be time to speak to a healthcare provider about the possibility of Ehlers-Danlos Syndrome. Early diagnosis can lead to better management of symptoms and improvements in quality of life.
If you’ve already been diagnosed, remember you are not alone many individuals with EDS lead fulfilling lives with the right support and care. Reach out to specialists, join support groups, and take small steps each day to manage your symptoms.