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May is EDS Awareness Month post 1

Updated: Jun 9, 2019

***Disclaimer*** Nothing on these posts should be taken as medical advice, I am speaking from personal experience.


May is EDS Awareness Month, I am a little late to the party as I had pretty serious Neurosurgery on the 9th May so I am still in the early stages of recovery but I am going to contribute the best I can. I will be answering @taylers.danlos.syndrome‘s 31 EDS Awareness Month Challenge questions, inter-cut with photos and EDS titbits. So here goes:


[#imagedescription: The title ‘Ehlers Danlos Awareness Month Challenge’ is written in blue follow by questions written in black font for each day of the Month of May.

As follows 1. What type do you have? 2. When were you diagnosed? 3. Comorbidities? 4. How hypermobile are you? 5. Are you “stretchy”? 6. Mobility aids? 7. Pain management? 8. Surgeries? 9. Hospital stays? 10. What is “your normal”? 11. What is your flare like? 12. What specialists or types of doctors do you have? 13. Funniest EDS story. 14. Worst doctor experience. 15. Best doctor experience. 16. What is your support system like? 17. Do you think EDS is “expensive”? 18. Do you consider yourself disabled? 19. Have you experienced ableism? 20. Worst part of EDS? 21. One thing EDS had taken from you. 22. One thing EDS has given you. 23. Something you wish everyone understood. 24. If you could rid yourself of one EDS symptom, which would it be? 25. One person your grateful for. 26. Scariest part of your future with EDS? 27. What are your health goals? 28. Have you ever met someone else with EDS in person? 29. If there was a cure for EDS woulf you take it? 30. How do you make your invisible illness visible? 31. What does awareness mean to you? Followed by the hashtags #EDSChallenge #ehlersdanlosawarenessmonth #MayForEDS]


Photo taken by @OscarVinter

#ImageDescription - off centre frame are two white arms and open hands which come down from the top of the frame on white sheets. From below the inside of the elbows the arms are bare. Above are rolled up blue, white and pale pink shirt. There are two large bruises on the inside of the arms, two text tattoos which are upside down and two hospital bracelets; one red, one blue. A semi-transparent white banner is across the bottom of the image with the words in black font 'May is Ehlers-Danlos Awareness Month']


1. What type do you have? There is a question mark over this, I was diagnosed with Hypermobility type after years of research, a diagnosis of idiopathic Gastroparesis and bad luck which didn’t seem to tell the whole story for me, years of self-advocacy and finally an appointment with a private Rheumatologist who specialises in EDS and saw my research and evidence of medical history and agreed to a Hypermobile EDS diagnosis. Since then my symptoms have been so severe and I have had cross-overs with Vascular type and a lot of spine involvement. I could not get genetic testing in the UK, even with all my efforts, I am currently in Barcelona and am due to have genetic testing to finally get some answers.


EDS titbit or tidbit as American's say: in 2017 the new EDS classifications stated that there were 13 types of EDS. There are known genes which correlate to 12 of these types. Hypermobile EDS is believed to be the most common type but the gene which correlates is still unknown. Although there has recently been a large injection of money into researching this in both the US and UK. There are however studies that show that in some patients with 3 comorbid illness HEDS (hypermobile EDS), POTS (Postural Orthostatic Tachycardia Syndrome) and MCAS (Mast Cell Activation Syndrome) often have a gene mutation causing double of the TPSAB1 gene causing higher levels of the protein Tryptase. See http://mentalfloss.com/article/87506/one-gene-mutation-links-three-mysterious-debilitating-diseases

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