I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.
Day 20- Go #Reds4VEDS awareness
Vascular EDS (vEDS) is a life-threatening connective tissue disorder that affects all tissues, arteries, and internal organs making them extremely fragile. Patients with vEDS typically have a heterozygous mutation in the COL3A1 gene, with the rare exception of specific heterozygous arginine-to-cysteine substitution mutations in COL1A1 that are also associated with vascular fragility and mimic COL3A1-vEDS. This affects type 3 collagen which is the major building block of blood vessels and hollow organs. I do not have this type of EDS but vEDS awareness deserves a special day and this one goes out to my fellow zebras with this type.
vEDS is estimated to effect between 1 in 50,000 and 1 in 200,000 people. This is about 1,500 to 6,500 people in the USA.
Many people do not know they have this condition until they have an event (usually an arterial or organ rupture) and even then doctors may not piece it together for awhile. Again and again, we need more awareness! And its worth saying again, that not everyone with EDS presents the same even those with the same types. Treatment and management is focused on preventing serious complications and relieving signs and symptoms.
I go red for vEDS ♥️
Common symptoms include thin, translucent skin; easy bruising; characteristic facial appearance; and fragile arteries, muscles and internal organs.
The signs and symptoms of vascular Ehlers-Danlos syndrome vary but may include:
• Fragile tissues (including arteries, muscles and internal organs) that are prone to rupture
• Thin, translucent skin
• Characteristic facial appearance (thin lips, small chin, thin nose, large eyes)
• Acrogeria (premature aging of the skin of the hands and feet)
• Hypermobility of small joints (i.e. fingers and toes)
• Early-onset varicose veins
Pneumothorax (air in between chest wall & lungs, causing lungs to collapse)
• Easy bruising
• Joint dislocations and subluxations (partial dislocations)
• Congenital dislocation of the hips
• Congenital clubfoot
• Receding gums