23 Signs You Grew Up With Ehlers-Danlos Syndrome: 2023

Ehlers-Danlos syndrome is a set of rare inherited disorders that impact the connective tissues of the body. Mostly joints, blood vessels, and skin are affected by this syndrome.

What is Ehlers-Danlos syndrome?

A group of rare inherited disorders that affect the connective tissues of the body, particularly blood vessels, skin, and joints, called Ehler-Danlos syndrome. The people who have this syndrome their collagen strength(which provides elasticity and strength to the skin, blood vessels, organs and joints) is affected. A diagnosis may take several years as people with Ehler-Danlos syndrome are born with it. Symptoms include joint hypermobility, hyperelastic skin, easy bruisping etc. Proper medical care and early diagnosis are significant to improve the quality of life as currently, there is no cure options are available. In this blog we will explore the 23 signs you grew up with Ehlers-Danlos Syndrome, symptoms, treatment options and diagnosis. It is crucial to know the 23 signs you have EDS as it help you to identify the disease and choose the accurate treatment options.

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Is Ehlers-Danlos syndrome genetics?

Yes, Ehlers-Danlos syndrome is a genetic disorder. Health experts have been founded more than twenty genes that are associated with EDS here some of them:

• COLIA2

• COLIA1

• COL5A1

• COL3A1 

• Variations in different collagen genes affect each type of Ehlers-Danlor syndrome.

• Variants in the TNXB gene cause the typical EDS and a few cases of hypermobile type.

• Variants in the COL5A2, COL5A1, and sometimes the COLIA1 gene cause the typical type of EDS

• Variants in the COLIA2 gene lead to cardiovascular EDS and some cases of arthrochalasia. 

These genes are responsible to give instructions for making different types of collagen. So variation in these genes can interrupt the processing or production of collagen as a result your skin, bones, and other parts of the body get weaker. This inceases characteristic features of Ehler-Danlos syndrome.

Read also How Fetal Alcohol syndrome affects your newborn and pregnancy?

Types of Ehlers-Danlos syndrome?

There are 13 types of EDS (Ehelr-Danlos syndromes), most of which are rare. Hypermobile Ehler-Danlos (hEDS) is the most common type.

Other comparatively common types of EDS are vascular, classical, and kyphoscoliotic.

Symptoms:

The symptoms of hEDS are: 

• Easy skin bruising

• Hypermobility of joints

• Clicking and pain in the joints

• Unstable joints that are likely to dislocate easily

• Urinary incontinence

• Increased heart rate after standing up and dizziness 

• Digestive problems such as heartburn

Diagnostic Tests 

Generally, the diagnosis is based on the patient’s symptoms, physical examination, and history.

There are no diagnostic tests for hEDS.

23 Signs You Grew Up With Ehlers-Danlos Syndrome:

The most common symptoms of EDS are painful joints, hypermobile joints, and frequent bruising.

For some patients, EDS may be related to an underlying medical condition. 

 23 signs of Ehler-Danlos syndrome are:

• Clumsiness

• Frequent tripping and falling

• High flexibility of joints

• Ability to thumb backward or bend a finger 

• Frequently joints dislocation, especially of the elbow or knee Feeling you are double joints

• Increased frequency of fracturing bones

• Hyperextended knee

• Fewer wrinkles

• Fear of relaxing your joints for fear of dislocation

• Frequent foot problems especially discomfort and pain

• Frequent fainting or dizzy spells

• Extreme fatigue

• Take longer to complete everyday activities

• Holding a pencil or pen differently to avoid discomfort, dislocation, and pain in your finger joints.

• Digestive issues like nausea, acid reflux, bloating

• Increased likelihood of vision issues, migraine, or postural orthostatic tachycardia syndrome (POTS)

• Running with a different gait than others

• Growing pain in ankles

• Joints make a popping or clicking noise

• Chronic body pain at a young age

• Inability to run fast

• Picky about the clothing to protect your sensitive skin  

Treatment

Unfortunately, there is no cure for EDS.

Treatment is based on preventing further complications and managing the symptoms.

Some ways to manage EDS are:

1. Physical therapy:

Physical therapy may be recommended to stabilize joints and make stronger muscles as in Ehlers-Danlos syndrome joints with connective tissues elevates the risk for dislocation.

2. Medications:

Generally, the mainstay for EDS treatment over-the-counter pain-relieving medications are used.

In the case of acute injuries, strong medications may be needed.

Health experts may want to lessen the patient’s blood pressure with medications, as patients with EDS have fragile blood vessels.

3. Surgery:

Patients with Ehlers-Danlos generally have many professionals supporting their journey with the illness. Therefore surgery may be needed in patients with repeated joints ruptured or dislocated organs and blood vessels.

The health expert team for EDS generally includes physiotherapists, counselors, and occupational.

Counseling for genetics may help people understand their situation, how it has been inherited, and the risk of transferring it to their children.

There is no definite treatment for Ehelrs-Danlos, but there is a possibility to manage many of the symptoms.

Conclusion:

EDS (Ehlers-Danlos syndrome) is a genetic disorder, but its symptoms may take several years (sometimes take decades) to show. 
More than 20 genes have been founded so far that are associated with the condition especially, COL1A1, and COL1A2.
EDS is a group of rare inherited illnesses or disorders that impact the body’s connective tissues.
Most people with this disorder are unaware of their condition as they are unable to spot signs such as joint dislocation and skin bruising.