May is dedicated to Ehlers-Danlos Syndrome (EDS) Awareness month, when everyone across the world with or without Ehlers-Danlos can come together and help spread awareness to the medical world of this invisible disease, help educate the public, and help donate towards further research to find a cure and understanding for this varied “zebra striped” community. Please click: ‘Ehlers-Danlos UK’ Charity to see how you can help contribute to “making our invisible visible”. With no action, there will be no change. There are still many people who are suffering from EDS but are undiagnosed/misdiagnosed due to lack of awareness in the medical and public community. You can help change this for the better by sharing my story and telling people about what it is. Do something positive to make change happen!
Here are 3 facts about EDS:
Fact #1: There are 6 different types of EDS that are inherited by faulty collagen and connective tissues to date, however there are thought to be more types that have yet to be classified: Classical, Hypermobility, Vascular, Dermatosparaxis, Kyphoscoliotic, and Arthrochalasia. To find out more, please click here.
Fact #2: Diagnosing EDS is a problem as it is not widely known in the medical world and can vary from very mild symptoms to extremely severe and debilitating. The most common symptoms for Hypermobility (Type 3 EDS, what I have) are: full body or specific areas of pain and chronic pain, joint hyper-mobility which can lead to dislocations/subluxations and join instability, stretchy and soft skin, gastrointestinal problems which can lead to deficiencies such as anaemia, B12 etc. (similar to IBS, allergies/intolerances to foods), autonomic dysfunction which can lead to problems with heart rate and blood pressure causing palpitations, fainting, light-headedness, heat intolerance and problems going from cold to hot temperatures (such as diagnosis of PoTS – Postural Orthostatic Tachycardia Syndrome), brain fog, fatigue, rupturing of ligaments and tearing of muscles due to weakness of collagen (connective tissues that make up our body), risk of rupturing an organ, risk of aneurysm, muscle spasms, poor healing and scars similar look like ‘papyrus’, headaches/migraines, sensitivity to light, jaw dislocations/pain, overcrowding teeth, susceptible to gum disease, easily bruised, trouble sleeping, don’t respond to local anaesthesia well and many many more….
Fact #3: There is no cure. Patients with EDS have to manage their symptoms and “flare ups” with life long specialist physiotherapy, pain management, and any surgical procedures must be done by EDS specialist surgeons which are few and far in the world e.g. my Craniocervical Insability and Chiari Decompression surgery in the USA.