A day in the life of an Ehlers Danlos Syndrome Patient
Рет қаралды 839
3 жыл бұрынHi, my name is Olivia!
I was born with a rare genetic condition known as Ehlers Danlos Syndrome (EDS for short). Living a normal life with this condition while receiving proper treatment and support is just about as rare as the condition. EDS causes a multitude of secondary conditions and with each secondary condition comes complications. In return this causes many medical professionals to reject patients that live with EDS out of fear from the unknown. This causes strain on ones mental health.
My goal in life is to help those that struggle with mental health by becoming a motivational speaker as well as raise awareness for EDS. I came to know of my life purpose through a miraculous experience that brought me faith. The struggles of this world are big and try to tear me down but my God is much greater and beyond the dirt of any planet.
What is EDS?- www.ehlers-danlos.com/what-is...
My experience with EDS- • My Rare 🧬Genetic Condi...
My secondary conditions- • P.O.T.S ❤️| THE TRIFEC... , • My Progressive Disease...
Link to Purchase Merch:
Channel T-shirts- www.bonfire.com/oli-keeping-t...
E-Mail- olikeepingthefaith@gmail.com
Just want to donate? Click on this link-
www.gofundme.com/f/21bw1arho0...
@johnlewis1640 3 жыл бұрын
Keep the faith Oli, you're getting the proper medical care, you're intelligent, young and spirited (and mobile!).Many people, like myself, are rooting for you.
@OliKeepingTheFaith 3 жыл бұрын
Thank you! It is strange that you chose to give me reassurance on these things specifically seeing how I mention them in my next video, recorded before this one was even uploaded. You may see what I mean if you watch my next upload, scheduled to go public tomorrow 9am Eastern Daylight Time.
@mikki_s1100 3 жыл бұрын
By any chance are you using numotion for your wheelchair company? I HATE numotion. They straight up lie to their customers, regularly measure clients wrong, are incredibly difficult to get a hold of, and file things with insurance wrong. All seems good and well until you order the wheelchair, and then it all goes downhill. got my custom chair from them, all the measurements are wrong. We could not get a hold of them when we realized it was the wrong measurements, and by the time they picked up the phone it was outside the wheelchair return period. I hate them. If you are using them, I hope your experience is better than mine
@OliKeepingTheFaith 3 жыл бұрын
😯 Oh no... of course that's the wheelchair company I ended up getting. I am so sorry that happened to you. I can only imagine how you must of felt after that since that is one of the great differences of having a custom wheelchair. I don't even know if my insurance covers anywhere else. Was there any other issues such as insurance not approving it because they filed the claims wrong, or any more delays separate from what you already mentioned about them not answering their phone?
@mikki_s1100 3 жыл бұрын
@@OliKeepingTheFaith it’s very upsetting, because insurance only pays for a new wheelchair once every 5 years. there were some issues with them filing things with insurance wrong, which made to process longer. I also wasn’t able to get ahold of them when I needed my wheels adjusted. Most people go through them, because usually they are the only place people can find, or the only place insurance covers
@OliKeepingTheFaith 3 жыл бұрын
I’m so sorry that happened. I am definitely looking to see if there is another place.
@micahtrumble1655 3 жыл бұрын
Im going through numotion and they have been amazing. I wont know if I was measured right until my chair comes but they fought for me hard with my insirance. What do you mean they lie?
@Legsafk 3 жыл бұрын
#1
@OliKeepingTheFaith 3 жыл бұрын
😅 That was not supposed to have gone public.. not sure how my settings got messed up. 🤦🏻♀️🤣
@Legsafk 3 жыл бұрын
@@OliKeepingTheFaith you're still #1 lol
@OliKeepingTheFaith 3 жыл бұрын
@@Legsafk 🤣 thanks! Normally my videos get the title "1" while they upload privately and then I go back and add the title, custom thumbnail, description, end screen, ect.. so I have no clue how that happened!! 🤷♀️
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