Ehlers-Danlos syndromes and hypermobility spectrum disorders (2024)

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  • Ehlers-Danlos syndromes and hypermobility spectrum disorders (2024)

    FAQs

    What is the difference between hypermobility syndrome and Ehlers-Danlos? ›

    Individuals who meet the established clinical criteria for hEDS receive that diagnosis, while those who do not meet those criteria but manifest symptomatic hypermobility are considered to have HSD.

    What is the life expectancy of someone with EDS? ›

    Patients with vascular EDS have an average life expectancy of 48 years. About 80% of patients might have a critical event by the age of 40 years. The lifespan of a patient with kyphoscoliosis EDS is reduced due to two reasons: Involvement of the blood vessels.

    What should people with EDS not do? ›

    Advice will depend on which type of EDS you have and how it affects you: you may be advised to avoid some activities entirely, such as heavy lifting and contact sports. for some activities you may need to wear appropriate protection and be taught how to reduce the strain on your joints.

    How does Ehlers-Danlos make you feel? ›

    There are many different types of Ehlers-Danlos syndrome, but the most common signs and symptoms include: Overly flexible joints. Because the connective tissue that holds joints together is looser, your joints can move far past the normal range of motion. Joint pain and dislocations are common.

    What can be mistaken for Ehlers-Danlos? ›

    Patients with EDS, especially those with EDS hypermobility type, are often misdiagnosed with conditions such as fibromyalgia, chronic fatigue syndrome, or depression, given the overlap of symptoms and the psychosocial impact they have on the patient.

    Am I just hypermobile or do I have EDS? ›

    If you have hypermobile EDS, common signs include unusual joint flexibility and slightly stretchy skin. The reason for this is because EDS is the result of defects in the type of collagen your body produces.

    At what age is Ehlers-Danlos usually diagnosed? ›

    Since Ehlers-Danlos Syndrome can be present at birth or shortly thereafter, it is not unusual for it to be diagnosed during a child's toddler years. This can be done by looking at their specific symptoms, family history, urine testing and skin biopsies. It can sometimes be helpful to perform a cardiac ultrasound.

    What are the facial features of EDS? ›

    As a type of Ehlers-Danlos syndrome (EDS), vascular EDs (vEDS) is typified by a number of characteristic facial features (eg, large eyes, small chin, sunken cheeks, thin nose and lips, lobeless ears).

    Do people with EDS look younger? ›

    Due to the collagen in the skin being extra stretchy, many EDS patients experience a lack of wrinkles as they age. This collagen may help EDS patients look younger and can also cause skin to feel extremely soft. Doctor's even describe the skin as “velvet-soft”.

    Does EDS affect weight? ›

    Two illustrative case reports, in which JHS/EDS-HT manifestations contribute to developing and maintaining disturbed eating behaviors and significant weight loss, are presented.

    What are the strange symptoms of EDS? ›

    Children with EDS often show delay in crawling, walking and standing. They tend to be more floppy than usual. Some rare types of EDS can affect growth and cause early joint dislocations.

    How does EDS affect hair? ›

    Hair can be sparse on the scalp and body. It is usually light in colour, brittle, and slow to grow. It may be very fragile, curly, twisted and hard to manage. Body hair at puberty and beard growth in males may not be affected.

    How does EDS affect bowels? ›

    Constipation is also common in patients with EDS and it is thought that a sluggish colon and difficulty with evacuation of the bowel are key causes.

    What foods should people with EDS avoid? ›

    For someone with both EDS and hypertension, reducing their intake of processed foods, which are often high in salt and unhealthy fats, would be crucial. They might also be advised to incorporate foods rich in potassium, magnesium, and calcium, such as bananas, leafy greens, and dairy or fortified alternatives.

    Why do people with EDS get so tired? ›

    Conditions which are commonly seen in EDS and which may manifest as or exacerbate fatigue include sleep disorder, chronic pain, deconditioning, cardiovascular dysregulation, bowel and bladder dysfunction, psychological issues and nutritional deficiencies.

    Can you have Ehlers-Danlos without hypermobility? ›

    Although joint hypermobility is observed across all types of EDS, not everyone with a type of EDS has joint hypermobility.

    What causes hypermobility besides EDS? ›

    However, genetic diseases are in place when it comes to hypermobility. These affect the body's joints, skin, and blood vessels. Three of the more severe causes of hypermobility joint disorders are called Ehlers-Danlos Syndrome (EDS), Marfan Syndrome (MFS), and Joint Hypermobility Syndrome (JHS).

    What are three conditions hypermobility may be a symptom of? ›

    If you have these symptoms with hypermobility, this could be a sign of: hypermobile Ehlers Danlos Syndrome (hEDS) Hypermobility Spectrum Disorder (HSD)

    Is hypermobility an autoimmune disease? ›

    Hypermobility has ties to autoimmune disorders, where the body's immune system mistakenly attacks its own cells.

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