The life expectancy of someone with Ehlers-Danlos Syndrome is often normal, but it also depends on teh type of Ehlers-Danlos syndrome.
For people that have the most common types of Ehlers-Danlos syndrome, like classical EDS and hypermobile, the life expectancy with EDS is normal.
However for people with the rarer variants of Ehlers-Danlos syndrome, particularly vascular EDS, they often have a shorter lifespan of around 48 years to 51 years as vascular EDS is the most severe and life threatening type of EDS as it affects internal organs and causes fragile, rupture prone arteries.
For another rare type of EDS, which is Kyphoscoliotic EDS, it also leads to a shorter life expectancy later in life often due to vascular issues or even restrictive lung disease.
Kyphoscoliotic EDS is characterized by severe spinal curvature and weak muscles and blood vessels.
EDS or Ehlers-Danlos Syndrome does cause some people to indirectly gain weight, although the weight gain is not a result of the EDS or Ehlers-Danlos Syndrome itself.
EDS does not directly affect your body's metabolism, but several of the most common symptoms and related conditions make management of weight challenging.
EDS or Ehlers-Danlos Syndrome can lead to limited mobility and chronic joint pain, instability and the fatigue can make traditional exercise difficult, and a decrease in exercise and activity lowers your daily calorie burn, which leads to weight gain.
Drugs that are often prescribed for managing eds neuropathic pain or comorbidities, like pregabalin, gabapentin and some antidepressants can also cause weight gain as a side effect.
And gastrointestinal issues, like dysmotility, gastroparesis and IBS are also common in people affected with EDS and they can disrupt nutrient absorption and metabolic balance, which also sometimes triggers fluctuation in weight.
And weakened connective tissues from EDS, can also make it harder for you to build and maintain muscle mass, because muscle burns more calories than fat at rest, the loss can slow your resting metabolic rate.
Most types of EDS or Ehlers-Danlos Syndrome, including classical and hypermobile as well as vascular EDS are also dominant, which means that a child only has to inherit the altered gene from 1 affected parent, which could be the mother or the father to have the EDS condition passed down to them, with a 50 percent chance of passing it on to each child.
And some rarer types of EDS or Ehlers-Danlos Syndrome also require the child to inherit an altered gene from both parents and in this case, both the mother and the father carry the gene, although they may not show any symptoms of EDS themselves.
And it's also possible for the child born to be the first person in a family to ever develop EDS a result of a new gene change called a de novo mutation that wasn't inherited from either parent.
And because the mutated genes are also located on non sex chromosomes, both female and male children are equally affected with EDS.
The red flags for Ehlers-Danlos syndrome are easy bruising, abnormal scarring, stretchy hyperextensible skin and severe joint hypermobility.
The joint and muscle red flags of Ehlers-Danlos syndrome include.
Chronic fatigue and pain, like unexplained, widespread joint pain and muscle pain, that is often diagnosed as growing pains in childhood and are often accompanied by severe, lingering exhaustion.
Frequent dislocations and subluxations, where joints pop out of place easily or frequently.
And extreme joint hypermobility, where joints easily bend far past the normal range of motion.
The wound and skin red flags for Ehlers-Danlos syndrome include.
Easy and unexplained bruising like heavy bruising with little or no impact.
Abnormal scarring, where you have scars that are wide, thin and crinkly and often are described as having a pizza dough texture or cigarette paper texture to them.
Poor wound healing, where cuts and scrapes take an unusually long time to heal or wounds which tear back open after they are stitched closed.
And stretchy and velvety skin, where you have skin that can be pulled abnormally far away from the body but snaps back when it's released.
The critical and vascular red flags for Ehlers-Danlos syndrome include.
Unexplained aneurysms or artery dissections.
Spontaneous organ rupture or bowel perforation.
A family history of sudden death or vascular complications and distinct facial features like having a thin nose, thin upper lip, prominent eyes that are combined with very thin, translucent skin where your veins are easily visible.
And other systemic red flags for Ehlers-Danlos syndrome are frequent hernias, due to weakened connective tissues, severe digestive or bladder issues, like unexplained IBS or irritable bowel syndrome, recurring acid reflux or pelvic organ prolapse at a young age and vision abnormalities, like severe myopia (nearsightedness), retinal detachment or extremely thin cornea..
The age that Ehlers-Danlos syndrome is usually diagnosed is by age 20s to 40s, although some cases of Ehlers-Danlos syndrome are diagnosed by around 12 years old.
Although most people wait until their 20s to 40s to get an official diagnosis of Ehlers-Danlos syndrome.
For hypermobile Ehlers-Danlos syndrome, the symptoms often show up in childhood, although diagnosis is commonly delayed into adulthood, but is partly a result of the subtlety of the signs and because adult diagnostic tools also require meeting specific hypermobility thresholds.
Classical Ehlers-Danlos Syndrome, the symptoms often start in childhood or adolescence with highly elastic skin and joint issues, although the diagnosis often gets delayed due to milder presentations.
And vascular Ehlers-Danlos syndrome is a more severe type of Ehlers-Danlos syndrome and is often diagnosed in adulthood after severe, acute complications, but it can also be diagnosed earlier if vascular fragility is suspected.
The age that EDS or Ehlers-Danlos syndrome usually starts is from birth, but the symptom onset of EDS or Ehlers-Danlos syndrome is often in childhood or adolescence ages.
EDS or Ehlers-Danlos syndrome often also emerges during puberty.
The actual age of onset of EDS or Ehlers-Danlos syndrome varies.
EDS or Ehlers-Danlos syndrome is a genetic condition that is actually present from birth.
And for some subtypes of Ehlers-Danlos syndrome, the signs may be noticeable as early as infancy, or remain mild enough that the symptoms or signs of Ehlers-Danlos syndrome are not noticed until adulthood.
For Vascular EDS or (vEDS), it's a rarer and more severe subtype of Ehlers-Danlos syndrome and initial symptoms of Ehlers-Danlos syndrome or vascular Ehlers-Danlos syndrome like severe, unexplained bruising might appear in childhood or even adolescence.
Although the most severe signs of vascular EDS or vascular Ehlers-Danlos syndrome, like arterial or organ ruptures are usually the first major indicators and are frequently present in adulthood.
For hypermobile EDS or hEDS and Classical EDS, the signs like hypermobility or double jointedness, frequent joint dislocations and easily bruised, soft or stretchy skin will often appear in early childhood or puberty.
Although, these are also frequently dismissed as being growing pains or clumsiness, which is also why the diagnosis is often delayed until the person is in their 20s, 30s, or even their 40s.
Ehlers-Danlos Syndrome (EDS) is not a type of autism. EDS is a group of genetic connective tissue disorders that affect the skin, joints, and blood vessels.
In contrast, autism (ASD) is a neurodevelopmental condition that affects how a person communicates, interacts, and perceives the world.
While they are entirely distinct conditions, clinical research shows a strong overlap and co-occurrence between EDS (particularly the hypermobile type, hEDS) and autism.
Ehlers-Danlos Syndrome (EDS) can be passed down by either parent.
Because Ehlers-Danlos Syndrome (EDS) is an autosomal condition, the gene is not tied to a specific sex chromosome, meaning both mothers and fathers can carry and transmit it equally.
Autosomal Dominant Inheritance: The faulty gene only needs to be inherited from one parent to cause the condition.
If one parent has this type, each child has a 50% chance of developing EDS.
This applies to the most common type, Hypermobile EDS (hEDS), as well as Classical and Vascular EDS.
Autosomal Recessive Inheritance: The faulty gene must be inherited from both parents for the child to develop the condition (e.g., Kyphoscoliotic EDS).
If both parents are carriers, there is a 25% chance of the child having EDS in each pregnancy.
Spontaneous (De Novo) Mutations: It is also possible to be the first person in your family to have EDS due to a spontaneous gene change that was not inherited from either parent.