EDS

I couldn’t live with Ehlers Danlos Syndrome and Cranio- Cervical Instability without: 1. My iPhone My iPhone is my lifeline, I use it 24/7, literally have it strapped to my arm with a seizure detection App Siezalarm on it. This detects the movements when I’m fitting and calls my […]

15 things I couldn’t live without, with Ehlers Danlos Syndrome ...

23/10/2016 in Blog tagged #MelaniesMission / #Seizures / 15 things I couldn't live without / Blog / CCI / Cranio Cervical Instability / EDS / Ehlers Danlos Syndrome / Fundraising / Graduation / Melanies Mission / Melanies Mission To Live / MelaniesMissionToLive / Social Media by Melanie

?Look out for my story online in the Chronicle on Saturday and printed in the Sunday Sun this week!? Dont forget you can buy our wristbands and ball tickets in our shop!! #melaniesMissionToLive #EDSAwareness #CCIAwareness

29/09/2016 in News / Uncategorized tagged #EDSawareness / #MelaniesMission / CCI / Cranio Cervical Instability / EDS / Ehlers Danlos Syndrome / Melanies Mission / Melanies Mission To Live / MelaniesMissionToLive by Melanie

This 5 year old sweetheart Elli, who also has Ehlers- Danlos Syndrome (EDS) is making these beautiful bracelets to build awareness of EDS and CCI 🙂 All monies raised will be donated to Melanie’s Mission to live, and will go towards helping “aunty Mel” Mel (Melanie Hartshorn)get to the US […]

#EllisMissionForMelanie

14/09/2016 in Fundraiser tagged #Bracelets / #CranioCervicalInstability / #EhlersDanlosSyndrome / #EllisMissionForMelanie / #MelaniesMission / #Sale / #Spoonie / #Zebra / CCI / EDS / MelaniesMissionToLive by Melanie