How do you say Ehlers?

Why is it called Ehlers-Danlos?

The syndrome derives its name from additional clinical case reports presented by two physicians: Edvard Ehlers, a Danish dermatologist, in 1901, and Henri-Alexandre Danlos, a French physician with expertise in chemistry of skin disorders, in 1908.

How do you explain Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body.

Is Ehlers-Danlos rare?

The combined prevalence of all types of Ehlers-Danlos syndrome appears to be at least 1 in 5,000 individuals worldwide. The hypermobile and classical forms are most common; the hypermobile type may affect as many as 1 in 5,000 to 20,000 people, while the classical type probably occurs in 1 in 20,000 to 40,000 people.

Why does EDS make you 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.

Is EDS linked to autism?

Recent research suggests that EDS may share strong links with autism. Case studies have previously been published identifying individuals who are both on the autism spectrum and have a diagnosis of EDS.

What is the life expectancy of someone with EDS?

People affected by vascular EDS have a median life expectancy of 48 years and many will have a major event by age 40. The lifespan of people with the kyphoscoliosis form is also decreased, largely due to the vascular involvement and the potential for restrictive lung disease.

Is Ehlers-Danlos a disability?

Can I Get Disability For Ehlers-Danlos Syndrome (EDS)? The answer is that Ehlers-Danlos Syndrome (EDS) can be a disabling condition, depending on how it presents. EDS is a genetic disorder affecting connective tissues and causing an array of serious physical problems, ranging from joint pain to cardiovascular issues.

Is EDS an autoimmune disease?

A much rarer group of connective tissue disorders is called Ehlers-Danlos syndrome. Unlike the diseases noted above, Ehlers-Danlos syndrome is not an autoimmune condition, it’s an inherited disorder.

Does EDS worsen with age?

Many of the problems associated with EDS are progressive, meaning that they get worse over time.

Are you born with Ehlers-Danlos syndrome?

EDS is something you are born with but symptoms may not manifest themselves until later in life. It is not uncommon for a genetic condition to first become apparent during puberty, alternatively symptoms can be triggered by a trauma, such as a virus, many years down the line.

Can you live a normal life with Ehlers-Danlos?

EDS cannot be ‘cured’ but many people learn over time how to control it and live full and active lives. The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing. In addition you should seek referrals for any associated conditions you may have.

Will I end up in a wheelchair with EDS?

Some patients with EDS may require specialized mobility devices, such as a wheelchair or a scooter, and a walker, crutches or a cane for mobility. However, care should be taken so that joints and other areas of the body affected by the disease are not injured by shifting weight when, say, walking with a cane or crutch.

Does EDS show on MRI?

MRI can help detect lesions in the brain containing collagen fibers, which are often seen in EDS patients who previously experienced trauma.

Does EDS cause weight gain?

People are always surprised by these symptoms (as I was!) but EDS can affect your organs, bladder and bowel movements as well. Some people with EDS need a feeding tube and have trouble gaining weight.” 3. “The sheer inability to relax my body for fear a joint will sublux at any moment.

Does EDS affect walking?

Kyphoscoliotic EDS

curvature of the spine – this starts in early childhood and often gets worse in the teenage years. joint hypermobility. loose, unstable joints that dislocate easily. weak muscle tone from childhood (hypotonia) – this may cause a delay in sitting and walking, or difficulty walking if symptoms get …

How do you protect your joints from EDS?

Management and Treatment

To protect the skin, doctors recommend using sunscreen and mild soaps. Taking extra Vitamin C can help reduce bruising. Physical therapy (exercises to strengthen the muscles supporting the joints) can help prevent joint injuries. Braces also help stabilize joints.

Can EDS affect your hearing?

Conclusion: Hearing loss is prevalent in patients with EDS. The hearing loss is equally of conductive and sensorineural origin, with a predisposition to be bilateral.

Does EDS affect hair?

Ehlers-Danlos syndromes primarily affects the skin, hair, and skeletal system. Symptoms usually begin by childhood or adolescence. Like people with other types of EDS, people with Spondylodysplastic EDS have unusually flexible joints; loose, elastic skin; and easy scarring.

Does EDS affect nails?

Abnormalities of the nails are frequently seen in clinical practice although there has been no specific study of these in people with EDS. Difficulty with hand function, coupled with painful upper and lower limb joints, may also make it difficult for someone to reach and cut their toenails.

Are bunions common in EDS?

Bunions are common in EDS patients. If the bunion is not painful it should best be left alone. Metatarsalgia is also common. Steroid injections may seem like a good idea for metatarsalgia, but will often weaken the soft tissues and make this problem worse.

Does EDS get worse in winter?

Where I find that cold weather makes my EDS worse is with muscle tightness. It’s natural that when a person gets cold, they tend to get tense, and that seems to be exacerbated by my EDS. When I get tight and tense from the cold, it doesn’t go away when I go indoors to warm up.