Does Ehlers-Danlos get worse with age?

Many of the problems associated with EDS are progressive, meaning that they get worse over time. Kyphoscoliosis EDS (kyphosis and scoliosis) is a form of Ehlers-Danlos Syndrome that is noted for severe, progressive curvature of the spine. It worsens over time and may affect breathing by restricting lung expansion.

Does hypermobile Ehlers-Danlos get worse with age?

EDS prognosis by disease type

The most common types of EDS (classical, classical-like, and hypermobile) do not greatly affect life expectancy. However, symptoms may become more severe as patients age and joints that have been dislocated multiple times become painful. Everyone's bones become weaker with age.

How does Ehlers-Danlos affect lifespan?

The long-term outlook (prognosis) for people with vascular Ehlers-Danlos syndrome is generally poor. It is often associated with a shortened lifespan. Among affected people diagnosed as the result of a complication, 25% have experienced a significant medical complication by age 20 and more than 80% by age 40.

Is Ehler Danlos progressive?

The life expectancy of a patient with Ehlers-Danlos syndrome (EDS) depends on the type of EDS and the patient's symptoms. EDS is a slowly progressive disease. EDS symptoms vary by type and range from mildly loose joints to life-threatening complications.

What is the most severe form of Ehlers-Danlos syndrome?

Vascular EDS (vEDS) is a rare type of EDS and is often considered to be the most serious. It affects the blood vessels and internal organs, which can cause them to split open and lead to life-threatening bleeding.

Consumer story: Living with Ehlers-Danlos syndrome

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. Doctor's even describe the skin as “velvet-soft”.

What mimics Ehlers-Danlos syndrome?

Tnxb-/- mice showed progressive skin hyperextensibility, similar to individuals with Ehlers-Danlos syndrome. Biomechanical testing confirmed increased deformability and reduced tensile strength of their skin.

What does an EDS flare up feel like?

Day 4 of the Photo-A-Day Challenge - What does a flare up (of symptoms) look like for you? "A "flare up" with EDS for me is extreme pain with my joints, a low grade fever, and subluxations of my fingers and other joints. "Today you are actually witnessing one of the longest flares I've had since being diagnosed.

Does EDS shorten life expectancy?

Patients with the classical and hypermobility forms of Ehlers-Danlos syndrome have a normal life expectancy. About 80% of patients with vascular Ehlers-Danlos syndrome will experience a major health event by age 40 and the life expectancy is shortened, with an average age of death of 48 years.

Can you live a full life with EDS?

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.

Does Ehlers-Danlos qualify for disability?

Applying for Social Security Disability with Ehlers-Danlos Syndrome. Like many rare genetic conditions, there is no Blue Book listing for Ehlers-Danlos. However, you may still qualify for benefits if you can match a listing associated with your particular symptoms or impairments.

Is Ehlers-Danlos debilitating?

Ehlers-Danlos syndrome (EDS) is a multifaceted debilitating disease. Affected patients are at risk for complications such as joint hypermobility and cardiac disease, but the prevalence, course, and management of these conditions are not well understood.

How serious is Ehlers-Danlos syndrome?

Vascular Ehlers-Danlos syndrome can weaken your heart's largest artery (aorta), as well as the arteries to other regions of your body. A rupture of any of these larger blood vessels can be fatal. The vascular type can also weaken the walls of the uterus or large intestines — which also may rupture.

Can Ehlers-Danlos suddenly get worse?

Individuals also have fragile, extra-stretchy skin that bruises easily, as well as low muscle tone. Certain types of Ehlers-Danlos Syndrome affect the brain and spine. Many of the problems associated with EDS are progressive, meaning that they get worse over time.

Do collagen supplements help Ehlers-Danlos?

Bottom Line: No established research or clinical experience has proven that collagen supplementation is helpful for persons with EDS! Theoretically, a diet adequate in glycine, proline, lysine, and vitamin C (or supplementation) would support collagen biosynthesis.

Is Ehlers-Danlos an autoimmune condition?

In the United States, two million people live with rheumatoid arthritis, and another 1.5 million live with lupus. 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 affect your hair?

The defects of the collagen previously reported in EDS account for the increased extensibility of the skin (1, 2). It is possible that the altered skin structure results in increased pliability of the skin which may allow the hair follicles to expand.

Does joint hypermobility get worse?

In many cases, the joints become stiffer with age, although joint hypermobility and its associated symptoms can continue into adult life. It's not known how many people have JHS in the UK, as the condition is often not recognised or is misdiagnosed.

What causes death with EDS?

The most serious complications include a rupture of a viscus or vascular rupture with or without mural dissection. Death may result from internal hemorrhage.

Does weather Affect Ehlers-Danlos syndrome?

But there is evidence supporting that cold weather/bad weather can increase pain to the joints in patients with arthritis, which is a common comorbidity of EDS. There are a few theories about the relationship between increased pain and the changes in barometric pressure in the environment.

What vitamins should I take if I have EDS?

We therefore hypothesize that the symptoms associated with Ehlers-Danlos syndrome may be successfully alleviated using a specific (and potentially synergistic) combination of nutritional supplements, comprising calcium, carnitine, coenzyme Q(10), glucosamine, magnesium, methyl sulphonyl methane, pycnogenol, silica, ...

How would you describe EDS pain?

Chronic pain in the Ehlers–Danlos syndromes, especially in hypermobile EDS, is very common and may be severe. It may be widespread or it may be limited to one area of the body such as a limb. Headaches and gastrointestinal discomfort can occur as well as joint, muscle and nerve pain.

What can a rheumatologist do for EDS?

The accurate diagnosis of EDS can allow specific management, family screening and prenatal diagnosis. The rheumatologist can play an important role in the diagnosis of EDS and is central to the ongoing management of many EDS patients. This talk will focus on Classical and Vascular types of EDS.

What serious health problems can come with EDS?

There are many neurological and spinal problems which have been observed to be more common in EDS, examples include migraine, early disc degeneration, Chiari 1 malformation, craniocervical instability, motor delay, and curvature of the spine. Musculoskeletal pain can start early and be chronic.

Does EDS affect nails?

Nail problems

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.