May is Ehlers-Danlos Syndrome Awareness Month
You can observe EDS Awareness Month by learning more about this rare condition or by supporting someone you know who has it.
Basic Facts About EDS
Ehlers-Danlos syndrome (EDS) is a group of disorders that affect connective tissues. Connective tisseus 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.
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
- EDS on Wiki: General Explanation and charts on different types of Ehlers-Danlos syndrome.
Symptoms of EDS
- Flexible joints, due to loose connective tissue
- Swan Finger
- Cardiac issues
- Easy Bruising
- Stretchy skin due to weakened connective tissue
- Fragile skin and abnormal scarring
- Inability to get numb from Novocaine
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.
Treatment of EDS and Hypermobility Syndromes
There is no known cure for Ehler’s Danlos Syndrome. Treatments that are offered are mostly to control pain, such as 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.
Ehlers-Danlos syndrome Websites
- EDS Genetics Home Reference
- Mayo Clinics Page on EDS
- National Organization for Rare Disorders Page on EDS
- Invisible Illness Links for 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 and Lyme Disease
EDS Patient Blogs
- 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
- 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
- Genetics of Ehlers-Danlos Syndrome Treatment & Management
- Local anaesthetic failure in joint hypermobility syndrome
- What Is Ehlers-Danlos Syndrome?
- What is Ehlers-Danlos syndrome EDS) and what causes it?
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)