Ehlers-Danlos Syndrome

Basic Facts

Ehlers-Danlos syndrome (EDS) is a group of disorders that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications.(From http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome)

May is Ehlers-Danlos Syndome Awareness  Month

EDS on Wiki: General Explanation and charts on different types of Ehlers-Danlos syndrome.

Symptoms of Ehlers-Danlos Syndrome

There are different types of EDS and hypermobility syndromes so symptoms may vary. The following are the most common symptoms of EDS.

Flexible joints, due to loose connective tissue

Stretchy skin due to weakened connective tissue

Fragile skin and abnormal scarring

More symptoms of EDS 

If you have the Vascular type of EDS then you may experience:

People who have the vascular subtype of EDS sometimes share distinctive facial features. These features include a thin nose, thin upper lip, small earlobes and prominent eyes. Also they may have thin, translucent skin which bruises very easily. Sometimes the underlying blood vessels are visible through the skin.

Mayo Clinics description of Ehlers-Danlos Syndrome Symptoms

Types of EDS

Classical Ehlers-Danlos syndrome (EDS)

Hypermobility Ehlers-Danlos syndrome

Vascular Ehlers-Danlos syndrome

Arthrochalasia Ehlers-Danlos syndrome

Dermatosparaxis Ehlers-Danlos syndrome

Kyphoscoliotic Ehlers-Danlos syndrome

Tenascin-X deficient Ehlers-Danlos syndrome

EDS Types Chart

Treatment of EDS and Hypermobility Syndromes

According to the Mayo Clinic there is no cure for EDS. The main treatments offered are pain medications, physical therapy and bracing to try to support joints and prevent dislocations. In the type of EDS that causes weak blood vessels, keeping the blood pressure lowered is necessary too.

Cause of Ehlers-Danlos Syndrome

EDS is believed to be an inherited condition due to gene mutations.  Defects in the following genes, ADAMTS2, COL1A1, COL1A2, COL3A1, COL5A1, COL6A2, PLOD1, TNXB cause EDS. These genes provide instructions on how to assemble collagen — except for ADAMTS2, which provides instructions for making the proteins that work with collagen.

Good explanation by Healthline on the causes of EDS

Ehlers-Danlos syndrome Websites

EDS Genetics Home Reference

Mayo Clinics Page on EDS

National Organization for Rare Disorders Page on EDS

Ehlers-Danlos National Foundation (EDNF) Page (What are the symptoms?)

EDS Support UK

Children and EDS

Collagen Diagnostic Labs

Hypermobility Syndromes Association

Is it Ehlers-Danlos Syndrome?

Ehlers—Danlos syndrome and multiple sclerosis: a possible association

EDS Patient Blogs

Life with Ehlers-Danlos Syndrome

Living with Ehler’s-Danlos Syndrome: Sometimes I don’t have it in me to be inspirational

Coping With Pain From Ehlers-Danlos Syndrome (Children’s Blog)

Falling Apart At The Seams: My Life With Ehlers-Danlos

EDS Today Advocates

My Journey and Life with Ehlers-Danlos Syndrome

EDS Alert Newsletter

Ehlers Danlos Syndrome. What day to day life is like.

Ehlers-Danlos Syndrome-Deal With It

EDS (Ehlers-Danlos Syndrome) – My Story

EDS Articles

Genetics of Ehlers-Danlos Syndrome Treatment & Management

Local anaesthetic failure in joint hypermobility syndrome

EDS Support Groups

Lyme and EDS (Facebook)

EDS Zebras Need Zebras (Facebook)

EDS Today (Facebook)

Ehlers Danlos Positive Support Group (Facebook)

Ehlers Danlos Support Group (Facebook)

EDS and Joint Hypermobility Wisconsin (Facebook)

Books

Awareness Items

(If you have a shop with awareness items put in comments below and we will add it.)

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s