What is the life expectancy of someone with EDS?

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. The median life expectancy for people affected by vascular EDS is 48 years.”

Is Ehlers-Danlos syndrome fatal?

People who have vascular Ehlers-Danlos syndrome are at risk of often fatal ruptures of major blood vessels. Some organs, such as the uterus and intestines, also may rupture.

Can you live a long time 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 EDS shorten your lifespan?

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.

Does EDS 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.

♡ Ehlers Danlos Q

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”.

Is EDS considered a 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 hypermobile EDS life-threatening?

Many people with EDS have easily dislocated joints and fragile skin, which is readily damaged. Accidents or injuries may, therefore, be more likely to be life-threatening for these individuals. For those with vascular involvement, the blood vessels are more likely to rupture, with or without cause.

Is vascular EDS a death sentence?

I know that you're really passionate about bringing awareness to the fact that vascular EDS - it's not a death sentence, and so I appreciate you talking about that.

Is it harder to get pregnant with EDS?

Conclusion. Women with EDS have a much higher rate of reproductive problems than would be expected to occur in a general population. Women with EDS suffer with a high incidence of infertility, spontaneous abortions, preterm labor, abnormal uterine bleeding, dysmenorrhea, and severe dyspareunia.

What age does EDS usually start?

It is usually diagnosed before the age of 2 years. Fragility, bruising and sagging of the skin are severe but, surprisingly, the skin heals well. Like the other rare types, in order to inherit it you need to inherit one faulty gene from EACH of your parents.

How fast does EDS progress?

My geneticist told me that it often takes an average of 10 to 20 years to receive a diagnosis of EDS, with many people not receiving an accurate diagnosis until well into their 40s. As with many medical conditions, EDS disproportionately impacts women.

Is EDS a progressive disease?

EDS is a progressive, degenerative connective tissue disorder that causes microtears in multiple organs. It is common to see EDS patients entering their teens or twenties who then develop severe pain.

Does EDS affect the heart?

Cardiac-valvular EDS (cvEDS) affects the connective tissue that forms the heart valves. These valves control how the blood flows out of the heart with every heartbeat. Patients with cvEDS have progressive weakening of the heart valves and may have problems such as high blood pressure.

Is EDS painful?

Conclusion: From this large cohort of EDS patients, we conclude that pain is common and severe in EDS. Pain is related to hypermobility, dislocations, and previous surgery and associated with moderate to severe impairment in daily functioning.

Does EDS run in the family?

Each type of EDS is a distinct disorder that "runs true" in a family. This means that an individual with one type of EDS will not have a child with a different type.

What is the most common cause of death among individuals with vascular Ehlers-Danlos?

The major cause of death is arterial dissection or rupture with organ failure.

Is vascular EDS a terminal illness?

Vascular Ehlers-Danlos syndrome is a rare, life-threatening, autosomal dominant variant of EDS, resulting from mutations in COL3A1 gene. Affected individuals are prone to serious and potentially fatal complications, especially vascular, intestinal, and uterine ruptures.

How does Ehlers-Danlos affect 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.

Are you born with EDS?

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.

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 is the best treatment for Ehlers-Danlos syndrome?

Physical therapy

Exercises to strengthen the muscles and stabilize joints are the primary treatment for Ehlers-Danlos syndrome. Your physical therapist might also recommend specific braces to help prevent joint dislocations.

What famous people have Ehlers-Danlos?

2019 brought much hope to the long-silent-suffering Ehlers Danlos Community when Lena Dunham, Jameela Jamil, and SIA revealed their EDS diagnoses.

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 Ehlers-Danlos qualify for SSI?

If you have EDS and are unable to work because of severe symptoms from it, you may be eligible for disability benefits, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).