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.
Is Ehlers-Danlos a serious illness?
While life expectancy may be compromised for those with Vascular Ehlers-Danlos, which affects the blood vessels and is considered the most severe form of the disorder, most EDS patients live a normal life span. And though there is no cure for EDS, there is treatment.
How serious is hypermobile Ehlers-Danlos Syndrome?
Hypermobile Ehlers-Danlos syndrome is an inherited connective tissue disorder that is caused by defects in a protein called collagen. It is generally considered the least severe form of Ehlers-Danlos syndrome (EDS) although significant complications can occur.
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.
Is Ehlers-Danlos a terminal illness?
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.
At what age is Ehlers-Danlos syndrome diagnosed?
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.
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.
What does Ehlers-Danlos feel like?
Pain in the abdomen. Frequent headaches. Pain with daily tasks. People with EDS can have trouble using pens and pencils, because holding tightly to something so thin becomes painful.
Is Ehlers-Danlos a disability?
Just having a diagnosis of Ehlers-Danlos is not enough to obtain an award of disability benefits. Your attorney must work with your doctor to document not only the medical details of your Ehlers-Danlos, but also the functional impairments that it causes.
Does EDS get worse with age?
Does EDS affect walking?
Kyphoscoliotic EDS 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 worse.
What are Ehlers Danlos syndromes?
Ehlers-Danlos syndromes (EDS) are a group of inherited connective tissue disorders caused by abnormalities in the structure, production, and/or processing of collagen. The new classification , from 2017, includes 13 subtypes of EDS. Although other forms of the condition may exist, they are extremely rare and are not well-characterized.
What are the complications of Ehlers-Danlos syndrome?
People who have Ehlers-Danlos syndrome, vascular type, are at risk of often fatal ruptures of major blood vessels. Some organs, such as the uterus and intestines, also may rupture.
What is Ehlers-Danlos connective tissue?
Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body. People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin.
What are the skin symptoms of Ehlers-Danlos syndrome?
Some people with Ehlers-Danlos syndrome will have overly flexible joints, but few or none of the skin symptoms. People who have Ehlers-Danlos syndrome, vascular type, often share distinctive facial features of a thin nose, thin upper lip, small earlobes and prominent eyes. They also have thin, translucent skin that bruises very easily.
https://www.youtube.com/watch?v=Au5GillheDM