As individuals with Ehlers-Danlos syndrome (EDS) transition into adulthood and older age, the clinical picture often shifts from the joint hypermobility of youth to a more complex array of chronic and systemic issues. While some mistakenly believe symptoms improve as joints naturally stiffen, the reality is that the underlying connective tissue dysfunction leads to cumulative damage that can manifest in new and more debilitating ways. This section explores the specific ways EDS affects the body over time, focusing on different subtypes and common health challenges.
Aging with Hypermobile EDS (hEDS)
Hypermobile EDS (hEDS) is the most common subtype and is not considered a progressive degenerative disease like multiple sclerosis, yet its symptoms can worsen due to long-term strain on the body. The journey into older adulthood with hEDS often means managing increased pain and the emergence of new systemic issues.
Musculoskeletal system
For many with hEDS, joint hypermobility may lessen with age as ligaments naturally stiffen, but this does not reduce pain. In fact, pain often becomes more widespread and chronic due to years of microtrauma from joint instability. This can lead to earlier-than-typical onset of osteoarthritis and degenerative joint disease. Weakened muscles, developed from trying to stabilize loose joints, can also contribute to increased pain and reduced function.
Systemic issues and comorbidities
Beyond the joints, aging with hEDS can bring out or worsen other health problems, often referred to as comorbidities. These are linked to the widespread connective tissue issues inherent to EDS.
- Autonomic dysfunction: Conditions like Postural Orthostatic Tachycardia Syndrome (POTS) can worsen, causing more severe dizziness, palpitations, and fatigue with age due to reduced vascular elasticity.
- Gastrointestinal problems: Delayed gastric emptying, chronic constipation, and reflux often become more prominent in midlife. In women, pelvic floor issues and uterine prolapse can become more common, with some estimates suggesting a high prevalence by age 50.
- Neurological symptoms: Chronic fatigue and “brain fog” can become more pronounced, along with migraines and small fiber neuropathy, which causes tingling or burning sensations.
- Hormonal shifts: Many women with EDS report a significant worsening of symptoms during perimenopause and menopause, likely due to the impact of declining estrogen on connective tissue integrity.
Vascular EDS (vEDS): Life-threatening risks with age
Vascular EDS (vEDS) is a rare but serious subtype where the fragility of blood vessels and hollow organs poses significant risks that increase with age. A major concern is the increased likelihood of arterial or organ rupture.
- Cardiovascular complications: By age 40, a substantial percentage of vEDS patients have experienced significant arterial events. The risk of arterial dissection or rupture of medium-sized arteries and the aorta rises over time.
- Organ rupture: Spontaneous rupture of hollow organs like the intestines, bladder, or uterus (especially during pregnancy) is a serious concern that increases with age.
- Premature aging appearance: Some individuals with vEDS may develop thin, translucent skin and prematurely aged skin on their hands and feet.
Managing EDS with age: Proactive strategies for quality of life
While EDS is a lifelong condition, proactive management can significantly impact how EDS affects you as you get older. A multidisciplinary approach focused on stability, pain management, and addressing systemic issues is crucial.
The role of physical therapy and exercise
Physical therapy is a cornerstone of EDS management for all ages but becomes even more vital with age to prevent further decline.
- Joint stabilization: Low-impact exercises, like swimming, cycling, and resistance training, help build muscle strength to support unstable joints and prevent injuries.
- Proprioception training: Exercises focused on joint awareness help improve stability and reduce the risk of future dislocations.
- Pacing and gentle movement: Learning to pace activities and incorporate gentle movement is crucial for managing fatigue and avoiding flare-ups.
Addressing systemic symptoms
Older adults with EDS often benefit from a range of other treatments tailored to their specific symptoms.
- Medication management: Pain medication, gastrointestinal support, and addressing autonomic dysfunction with beta-blockers or other medications can be necessary.
- Nutritional support: Diet can play a large role in managing gastrointestinal issues and inflammation.
- Assistive devices: Braces, splints, and other mobility aids may be needed to support joints and conserve energy.
- Mental health support: Managing the emotional toll of a chronic, complex condition is essential. Psychological therapy, stress management, and finding support communities are beneficial.
EDS Subtypes and Their Impact Over Time
| Feature | Hypermobile EDS (hEDS) | Vascular EDS (vEDS) | Classic EDS (cEDS) |
|---|---|---|---|
| Joint Hypermobility | Often lessens with age, but pain increases from cumulative wear and tear. | Present, but typically confined to smaller joints like fingers and toes. | Instability often persists, though some report less frequent dislocations. |
| Chronic Pain | Increases in severity and spread over time due to years of joint instability and microtrauma. | Chronic pain can occur but is not the primary feature; focus is on vascular issues. | Persistent joint instability leads to chronic pain and early-onset osteoarthritis. |
| Cardiovascular Risk | Mitral valve prolapse and aortic root dilation can occur but are generally milder; autonomic dysfunction (POTS) can worsen. | Significant risk of arterial dissection and organ rupture; risk increases with age. | Mitral valve prolapse and aortic dilation can occur. |
| Skin Changes | Soft and velvety skin, easy bruising, and stretchy skin remain common; scars from past injuries are visible. | Thin, translucent, and fragile skin with visible veins; premature aging appearance may develop. | Fragile skin, poor wound healing, and widened, atrophic scarring continue to be significant. |
| Other Complications | Worsening fatigue, migraines, gastrointestinal issues (gastroparesis, reflux), pelvic organ prolapse. | Organ rupture (bowel, uterus), pneumothorax, vision issues. | Hernias, organ prolapse, and muscle weakness. |
Conclusion
Aging with Ehlers-Danlos syndrome is a multifaceted experience defined by the progression of symptoms and the development of new, often systemic, health challenges. While EDS is not inherently degenerative in the traditional sense, the compounding effects of weakened connective tissue lead to increased chronic pain, fatigue, and other complications over a lifetime. Managing this journey requires a proactive, personalized approach that often includes targeted physical therapy, lifestyle adjustments, and attentive medical monitoring. Understanding the specific trajectory of your EDS subtype is crucial for anticipating potential issues and implementing strategies to maintain the best possible quality of life. As research continues to shed light on the long-term impacts of EDS, resources and support systems are becoming more robust, empowering individuals to navigate their health with greater control and confidence.
