To understand more about the interplay of EDS, Hypermobility and #neurodivergence, watch our CPD certified Community of Practice session Dr Jessica Eccles – Hypermobility, Pain & Neurodivergence: neurodivergencewales.org/en/resources...
#EDSAwarenessMonth
#HSDAwarenessMonth
I ddeall mwy am y cysylltiad rhwng EDS, Hypersymudedd a #niwrowahaniaeth, gwyliwch ein sesiwn Cymuned Ymarfer wedi’i hardystio gan CPD - Dr Jessica Eccles – Hypersymudedd, Poen a Niwrowahaniaeth: neurodivergencewales.org/en/resources...
#EDSAwarenessMonth
#HSDAwarenessMonth
📢 “1 in 10 diagnosed. 10 in 10 deserve care.”
Too many are being missed. Join us this May to raise awareness and push for better access to diagnosis and care.
👉 www.ehlers-danlos.org/1in10
#1in10 #EDSAwarenessMonth #HSDAwarenessMonth #TeamZebra
1 in 10 diagnosed.10 in 10 deserve care.
This needs to increase across the UK. Too many are missed, misdiagnosed, or left without support.
👉 Join the campaign www.ehlers-danlos.org/1in10
#1in10 #EDSAwarenessMonth #HSDAwarenessMonth #TeamZebra #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
What is Ehlers Danlos Syndrome? Ehlers Danlos Syndrome (EDS) is a group of 13 genetic connective tissue disorders ranging from rare to ultra rare. EDS is typically inherited but can also form from a gene mutation in the womb. EDS is known to cause multi- systemic issues, as connective tissue is throughout the entire body. All types of EDS are different, but they share a few common features such as hypermobility, tissue fragility and skin hyperextensibility.
What are the types of EDS and how rare are they? Arthrochalasia EDS (aEDS), Brittle cornea syndrome (BCS), Cardiac valvular EDS (cvEDS), Classical EDS (cEDS), Classical-like EDS (CIEDS), Dermatosparaxis (dEDS), Hypermobile EDS (hEDS), Kyphoscoliotic EDS (kEDS), Musculocontractural EDS (mcEDS), Myopathic EDS (mEDS), Spondylodysplastic EDS (spEDS), Periodontal EDS (pEDS), and Vascular EDS (VEDS). All types are considered ultra-rare affecting less than 1 in 1 million for each one except for Classical EDS (1 in 20,000-40,000), Vascular EDS (1 in 100,000-200,000) and Hypermobile EDS (1 in 3100-5000) which are rare.
What is exactly is Hypermobility Spectrum Disorder? Hypermobility Spectrum Disorders (HSD) are a group of undefined genetic connective tissue disorders. HSD is estimated to affect 1 in 500 people, making it common and underdiagnosed. HSD is a catch-all diagnosis for those who do not meet the 2017 hEDS diagnostic criteria, however this does not mean it is any less severe than hEDS. It is highly suspected that HSD and hEDS are the same disorder.
Why is EDS & HSD awareness so important? EDS and HSD are extremely underdiagnosed, with the estimated time of diagnosis from the onset of symptoms being 10-12 years. That is far too long. Awareness helps us to further education in the medical field fund research, and increase preventative care. When it comes to EDS, the earlier the diagnosis the more likely someone is to lead a normal, functional life.
May is Ehlers Danlos Syndrome (EDS) & Hypermobility Spectrum Disorder (HSD) awareness month!
To help spread awareness I've created some graphics about the basics of EDS and HSD. Feel free to share them, repost them, anything you'd like.
#EDSAwarenessMonth #HSDAwarenessMonth
