Ehlers-Danlos Syndrome
LivingWithEDS's Channel
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LivingWithEDS
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Profile
 
Name:
Nadia
Channel Views:
7,136
Total Upload Views:
35,646
Age:
24
Joined:
Aug 23, 2010
Latest Activity:
5 days ago
Subscribers:
145
Looking for Answers
About Me:
 
I have been diagnosed with everything from growing pains to fibromyalgia. I was a medical mystery and thought to have been making all of my symptoms up based solely on my appearance. A geneticist finally diagnosed me with EDS. Even with this diagnosis, I am having difficulty finding a medical professional that knows how to manage this disorder. I want to create EDS awareness so that future generations don't have to suffer undiagnosed as I did, and for all those currently undiagnosed to finally find the real reason for their ailment. I am tired of being dismissed as having a condition that is too complicated. It is time to be heard, I've been suffering in silence for too long. Check out my site at www.EDSers.com. Feel free to look me up on facebook (www.facebook.com/bodkin1032).
Hometown:
Somewhere over the Rainbow
Country:
United States
Occupation:
Founding President
Schools:
Rutgers University
Interests:
Rare Chronic Conditions Research & Awareness
Recent Activity  
LivingWithEDS commented on Ganoderma (5 days ago)
"@RozlinTheFallen Thanks, I'll check it out :)"
 
 
LivingWithEDS commented on Ganoderma (5 days ago)
"@mystery8881 Yea, I'm not sure how I would react to it either...that's w..."   more
 
 
LivingWithEDS uploaded a new video (6 days ago)
Has anyone used ganoderma to manage chronic pain? I am curious to hear a...   more
 
 
LivingWithEDS commented on Staying positive in the mis... (6 days ago)
"@missnikkiann Wow! Its amazing we both have similar places that we go to..."   more
 
 
LivingWithEDS commented on Staying positive in the mis... (1 week ago)
"@dopemcee No offense taken...I never referred to it as "meditation"..."   more
 
Channel Comments
ChilloutSessionZ (2 weeks ago)
nerves circulatory system
gwap360 (2 weeks ago)
Things are not what they appear to be.Understand that genetic engineering has been(and still is) a huge factor in human history. There is a whole world that most people cannot see.
0o0kaija0o0 (2 weeks ago)
Hey! Happy New Year to you too...just a wee bit late...lol. This thing with the channels is driving me batty! *crosses eyes*. How ya been?
thomashoag (1 month ago)
I like the zebra (reality) versus unicorn (delusion) comparison.
pearjas (1 month ago)
Hi there! I just posted a video about EDS.. tell me what you think?? :)
DrShpilev (1 month ago)
Hi,

I've been watching some of your videos and just wanted to say that I feel for you and hope that you are feeling better.
MonaVie40 (1 month ago)
Hi Nadia..Thank you for the message. I hope your having a peaceful day or night.
MonaVie40 (1 month ago)
Nadia I am so sorry to hear about your pain and sleeping disorder. I also suffer from chronic pain associated with fibromyalgia, including trigger points, tenderness, morning stiffness, aching joints, and headaches. I do not take any meds for my pain they do not work for me. lack of sleep is also what i struggle with. So anyone that can relate would be so helpful. hope you feeI better!
RozlinTheFallen (2 months ago)
So I went to the rheumatologist. Going to be 3-4 months till he even diagnoses me. No Surprise. However, just talking to me he completely discredits the other rheumatologists concerns about me having type 4 (agrees it probably is type 3) on the theory that people with type 4 are usually dwarves and don't live to be my age without at least surgery... unfortunately, he is the only rhuematologist in LA who accepts medicaid. -praying for medicare- Just the first video on your favorites about the 3D imaging discredits what he's said --sigh-
RozlinTheFallen (2 months ago)
Steroids are bad news but I grew up diagnosed with asthma though I rarely have brearhing troubles. The albuterol sulfate inhailers are pretty good to have around. they're more stimulant than steroid lol but they work in a pinch and the side effects are an easy trade off. I need to know about the next step of pain relief. They are still giving my crap like naproxen and the fibromyalgia medications and tramadol after futile months of vicodin. They all make me sick and don't even touch the pain on the rare chance they give me anything... I need to know what works well without making them scream drug addict -sigh-
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