Do Ehlers Danlos Syndrome Gets Worse Over Time?

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Yes, EDS may get worse with time as it advances. It’s a degenerative disease with no cure. It’s hard to predict how much worse it will get or how quickly it will proceed. Although everyone with EDS is different, even those with the same kind of EDS, Some people may have no difficulty adjusting to their new reality throughout their life. Some patients will experience severe symptoms of EDS that worsen with time and cause them to be unable to function normally.

EDS is linked with several issues that are progressive, meaning that they worsen over time. Kyphoscoliosis EDS (kyphosis and scoliosis) is a kind of Ehlers-Danlos Syndrome characterized by severe, increasing spine curvature and kyphosis. It worsens with time and has the potential to impair breathing by limiting the expansion of the lung. However, the impacts of living with what those mutations do to your body and systems compound over time, and the severity of those effects increases.

The Basics of Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome is a set of genetic diseases that primarily affect the skin, joints, and other organs such as the heart and kidneys. The connective tissues of the body become weak and excessively flexible as a result of EDS. Some components of the body’s natural connective tissue are not produced by people who have EDS, which means they are born without generating them.

It is important to note that Ehlers-Danlos Syndrome is a constellation of many distinct illnesses, all of which share to some degree a flaw in a patient’s connective tissue that causes that tissue to be brittle and elastic. As a result, there may be various problems, including increased bruising, loose joints, persistent discomfort, and significant medical issues in rare cases.

Fertility and Pregnancy

Some types of EDS (particularly EDS IV) might result in significant problems such as bleeding or tearing during delivery or the birth of a child prematurely. Any woman who has EDS should consult with a knowledgeable doctor about the condition and its implications before becoming pregnant.


EDS is a very uncommon condition that affects fewer than 1 in every 20 000 persons worldwide. EDS is defined by changes in the chemical structure of the body’s connective tissues, which can manifest themselves in various ways (for example, skin muscles, tendons, and ligaments). The skin may become brittle, and joints may become unstable as a result of this.


It’s important to realize that parents have no control over which genes they pass on to their offspring or which genes they acquire from their parents before reading about heredity. As a result, if one or more of their children gets EDS, their parents should not feel guilty about it.

One definition of an inherited condition is handed down from one generation to the next within a family. The genetic mutation results from a change (mutation) in one of the approximately 50 000 genes on each chromosome (the thread-like structures found in the center of each cell). Genes act as blueprints for the growth and operation of every cell in a person’s body, and they are passed down from generation to generation.

Genes and chromosomes are found in pairs, just as they are in nature. It is estimated that each parent contributes half of each gene pair to the child’s DNA at conception. The new gene pairs are responsible for determining the characteristics or traits the child will inherit.

The vast majority of inherited genes are normal. A gene, on the other hand, can occasionally alter from its initial shape. This type of alteration is referred to as a “mutation.” The precise reasons for a mutation’s occurrence are almost always unknown. Mutations can arise regularly. Most mutations are not dangerous, but now and then, a mutant gene performs incorrectly, resulting in disease, malfunction, or deformity. Different mutations of connective tissue genes result in the development of the various types of EDS.

Inheritance of EDS can occur through three different inheritance mechanisms: autosomal dominant inheritance, autosomal recessive heredity, and X-linked recessive inheritance. A family having one form of EDS will not acquire another type, and the inheritance pattern within a family will be the same as it is outside the family.

Is There a Known Cause of Ehlers-Danlos Syndrome?

In most cases, EDS is believed to be caused by a gene mutation that affects collagen, responsible for the structure and strength of connective tissue. Some of the genes linked with EDS are involved in collagen production, while others are involved in the regulation of collagen function. Changing any of the genes that control the synthesis or utilization of collagen can cause the connective tissue in the body’s skin, bones, blood vessels, and organs to become weaker and more vulnerable to injury. Some forms of EDS can be handed down from parent to child (known as “heritable”), but others can be caused by a spontaneous gene mutation that arises during early development (known as “spontaneous”).

Some of the newly found forms of EDS are connected with genes that do not appear to be related to collagen formation at all, and we do not yet understand how the mutations in these genes result in the development of the typical characteristics of the disease. Chronic musculoskeletal pain and frequent joint dislocations are two of the most prevalent symptoms of Ehlers-Danlos Syndrome in adults. The skin on their bodies is delicate and readily bruised, and they have poor muscular tone, which makes them vulnerable to infection. Ehlers-Danlos Syndrome is a genetic disorder that affects the brain and spine. EDS is linked with several issues that are progressive, meaning that they worsen over time.

Kyphoscoliosis K and S (Ehlers-Danlos Syndrome) is a kind of Ehlers-Danlos Syndrome characterized by severe, increasing curvature of the spine and kyphosis. It worsens with time and has the potential to impair breathing by limiting the expansion of the lung.

The spondylodysplastic EDS type is characterized by skeletal anomalies such as abnormally bent (bowed) limbs and low height, among other characteristics.

Infants with arthrochalasia EDS exhibit significant joint hypermobility and congenital hip dislocation, in addition to the characteristic frail, loose skin and poor muscle tone that are diagnostic of the condition.


At least nine distinct kinds of EDS have been discovered, and the symptoms that a person experiences vary depending on which form of EDS they have.

The symptoms of EDS differ based on the kind of EDS that a person has. The two most prevalent types of Ehlers-Danlos syndrome (EDS Type I and II) are distinguished by the presence of one or more of the following characteristics:

  • issues with the skin
  • skin that feels smooth and velvety
  • skin that is prone to bruising and tearing
  • skin that stretches like a rubber band
  • bruising that is easy or severe
  • weak and inefficient wound healing (usually taking weeks to months to heal)
  • tiny, non-cancerous lumps under the skin
  • issues with the joints
  • loose, unstable joints which are susceptible to frequent dislocations, which often affect the shoulders, knees, hips, collar bone, and mouth
  • double jointedness (hyperextensible joints), which can be severe in some instances.
  • joint discomfort as a result of repeated dislocations
  • issues with the eyes
  • Nearsightedness can become severe at night times.

The following are some of the less frequent symptoms that may arise with the more uncommon types of EDS:

  • periodontal disease (EDS) VIII)
  • scoliosis (curvature of the spine) (EDS VI)
  • difficulties with the coagulation of the blood (EDS X)
  • more severe diseases affecting the eyes (EDS VI)
  • issues with the lungs (pulmonary (lung) difficulties) (EDS IV)
  • Weak blood arteries in the intestines or uterus may cause more significant problems (EDS IV)


There are specific diagnostic tests available for some forms of EDS in which a recognized biochemical abnormality has been identified. Your medical history will be reviewed by the doctors, who will also do a thorough physical examination.

Being affected by EDS entails more than just being limber or having multiple joints. The capacity to stretch the joints beyond their usual limits is referred to as “overextension.”

Occasionally, a skin biopsy is done to determine the chemical composition of the connective tissue. In a simple and virtually painless procedure known as biopsy, a little skin sample is taken and sent to a lab for evaluation.


Treatment you receive depends on how EDS affects you. More than one of the following treatments and precautions may be prescribed.

You must have frequent check-ups with experts experienced with EDS since significant consequences can arise in the more uncommon types of the disease. Inquire with your doctor about the signs and symptoms of any potential problems, as well as what to do if they arise.

What Is the Prognosis?

It is possible to forecast the fate of an illness, including the course of symptoms and life expectancy, using disease prognosis. There have been forecasts made based on a sample of persons who have the infection. The greater the number of people who have the condition, the more accurate the forecasts. In the event of uncommon diseases, there may be insufficient evidence to make a prognosis.

Patients with EDS have a wide range of prognoses, highly dependent on the exact form of EDS they are suffering from.

The Prognosis for EDS Depending on Disease Type

There is no significant difference in life expectancy between the most prevalent forms of EDS (classical, classical-like, and hypermobile). On the other hand, patients’ symptoms may worsen as they age, and joints that have been dislocated numerous times may become uncomfortable.

Every person’s bones become weaker as they grow older. Patients with EDS who have hypermobile joints may experience worsening symptoms as the condition advances due to the weakening of bones. In addition, broken bones and joints that have already been dislocated may shatter more frequently.

Severe types of EDS (vascular and cardiac-valvular) have been shown to shorten life expectancy. These forms of EDS can cause the blood vessels to become weak and susceptible to injury. In difficult situations, this condition can be life-threatening. The majority of vascular EDS patients have experienced a severe episode by the time they are 40 years old.

Only a few examples of the more uncommon types of EDS (such as dermatosparaxis and musculocontractural) have been described in the scientific literature. Because the amount of data available for newly diagnosed individuals is limited, it might be challenging to estimate their prognosis. According to the information currently available, these uncommon kinds do not appear to impact longevity.


Learning how to preserve your joints will aid in the prevention of future damage, the reduction of discomfort, the conservation of energy, and the ability to remain as active as possible. Identification of joint-pain-inducing activities and the development of less painful methods of movement and task performance

Exercising should be avoided if it causes you to overextend or “lock” your joints. Chronic “traumatic” arthritis may develop as a result of repeated overextension of the joints. You should avoid doing things like leaning on or pushing off with the palms of your hands. Fingers get hyperextended as a result of these motions.

Minimize toys and other things out of the path of walkways, entrances, and exits to keep slips and fall at home at a minimum. Avoid the usage of scatter rugs and slippery floor polish to keep your floors safe. Toddlers and young children must be encouraged to wear knee pads to protect their knees if they fall.

If reaching or extending puts your joints at risk for injury or dislocation, consider utilizing self-help equipment such as long-handled combs and reachers. Most gadgets may be obtained at hardware or variety stores, pharmacies, and medical supply stores.

The way you store goods that you use regularly can make a difference. Are all of the things within reach? Otherwise, reorganize storage places and arrange goods at a suitable height for the user. Installing a ramp over the stairwell may be an option if stair climbing causes severe strain on your knees or hips. Make duplicates of goods above and downstairs to prevent having to go up and down the stairs frequently. Identify additional methods to make your house or workplace a more secure and pleasant environment. Experiment with different approaches to find what works best for you.

Eyes Treatments

Routine eye exams are recommended for both children and adults. Nearsightedness (myopia) is a common problem that can be treated with prescription eyeglasses or contact lenses, depending on the individual. People who have EDS VI are at an increased risk of developing more severe eye problems, and they should speak with an eye specialist who has experience treating EDS.

Vitamin C

Depending on the individual, vitamin C (ascorbic acid) may or may not be beneficial in decreasing the intensity of symptoms in persons who have EDS VI and perhaps other kinds. If you are taking supplementary vitamin C, consult with your doctor before doing so.

Exposure to the sun

Sun exposure causes premature aging in many persons with Ehlers-Danlos syndrome, a risk factor for the condition. When out in the sun during peak daylight hours, apply sunscreen with a protection factor of 15 or more, and dress in long sleeves, long pants, and a broad-brimmed hat to shield yourself from the sun.

Exercising and Receiving Treatment

It is possible to enhance joint stability with the use of prescribed exercise regimens that strengthen the muscles. Weightlifting, on the other hand, should be avoided. It puts an excessive amount of tension on your joints. It is best to avoid any workouts that lead you to put pressure on your locked joints in the first place. Discuss suitable strengthening activities with your doctor or physical therapist to understand how to perform them most effectively.


Surgery is required for those who have EDS to repair fractures and dislocated joints. If you are scheduled for any surgery, be careful to inform the doctors that you have Ehlers-Danlos syndrome so that they can decide whether to use staples or tape (rather than stitches) to seal wounds instead of stitches to minimize pain. Any vascular or bleeding issues should also be brought to the attention of the surgeon.

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