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Title:Living with Vascular EDS (EDSIV known as VEDS)
Duration:29:20
Viewed:10,194
Published:20-01-2016
Source:Youtube

EHLERS-DANLOS SYNDROME (EDS): In 2012 I was diagnosed with EDS, a genetic connective tissue/collagen disorder . Collagen is involved in joints, ligaments, muscles, skin, organ development, the vascular system, membranes throughout the body (including the blood brain barrier) and protects nerves throughout the body. It plays important roles in brain development and information processing, is an important signaller and regulator at the cellular level. Those with EDS commonly have a history of food allergies, recurrent infections, and a higher incidence of developmental delay/information processing issues. Because collagen is important in blood pressure regulation around 40-70% of people with EDS develop some broader level of autonomic dysfunction associated with blood pressure dysregulation. This can effect respiration, heart, circulation, temperature, bladder and digestion/bowel function and can come with associated dizziness and fainting or near fainting. Some people with EDS have developed central hypoventilation though the link is not yet understood. There are different types of EDS and one can have features of more than one type. I am diagnosed with EDSIII/IV. Type III effects around 1 in 5000 people, type IV is presently thought to effect around 1 in 40,000. I have four relatives on my mother's side who had ruptures before the age of 40 (two with uterine rupture, one with spleen rupture, one with brain aneurysms) which makes it likely I have type 4, the Vascular type. Whilst this type is known to come along with significant health risks and most diagnosed with it do not live into their 50s, it is also true that most are only diagnosed once they rupture and so there may be many more who live a normal life span who simply go undiagnosed just as I had. My father's mother is from double cousins which means her parents had around 25% of shared genetics. This is linked to mutations and Ehlers Danlos Syndrome can also be a de novo... ie newly emerging... mutation. I recently discovered three cousins descended from that paternal grandmother who may have the diagnostic features of the Hypermobility form of Ehlers Danlos. So its possible I inherited one or two forms of EDS, one from each side of my family. I have disabled comments because I have no time for trolls. Those living with VEDS wanting to connect can find me via my website www.donnawilliams.net



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