Woman's rare connective tissue disorder was dismissed for anxiety

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A woman who couldn't sit up for more than 30 minutes without fainting was diagnosed with a rare connective tissue disorder after her symptoms were dismissed as anxiety.  Crystal Bradley, 23, grew up constantly on crutches and braces from dislocating her joints.  When she hit her late teens she started to struggle with "crippling migraines", light and sound sensitivity and even became housebound.  Doctors dismissed her symptoms for anxiety but her pain continued to get worse.  She would crack her neck to help with the agony she was in and went to see a chiropractor for a year - which she later found out had worsened her condition.  After seeking several opinions she was finally diagnosed with Ehlers-Danlos syndrome (EDS) -  a group of rare inherited conditions that affect connective tissue - in February 2024.

Transcript

00:00I'm Crystal, I have a connective tissue disorder and cervical instability.

00:04Um, what's cervical instability? It's when your vertebrae dislocate or sublux

00:08and they can pinch and poke your spinal cord and yes it sounds as dangerous as it is.

00:13Okay, so stop cracking your neck and frankly your entire back because it can happen anywhere.

00:18Um, and I also want to tell you more about spinal manifestations of connective tissue disorders

00:24because a lot of people don't know about them and so many people that are doctors don't know

00:30about them but talk about them and say really really harmful things. Um, like it's just a gas

00:36bubble your joints cracking it's fine or my personal favorite from a pain management physician

00:42you're just really hyper vigilant that you're from Kentucky and that's why your neck is cracking

00:47and grinding. Um, and then also the neurosurgeon in Boston who I saw who diagnosed me with

00:56functional neurological disorder and left me to rot in bed missing a CSF leak and cervical

01:01instability and I'm not that ridden anymore after an epidural blood patch that was successful

01:06so figure that one out my guy. Um, I just would like to spread awareness about how little there

01:16is around connective tissue disorders and their spinal manifestations because people think they

01:21can go down the street to the hospital and they'll get referred to the right person who can take care

01:26of them and that's not the case they don't even know that that person exists or that that condition

01:30exists but they will boldly and adamantly tell you things that are unsafe and untrue. Um, I was told

01:38to remove the neck brace despite all of these things going on and advisement by my neurosurgeon

01:44not to by multiple specialties that had no business telling me that. Um, I I had been told

01:53insane things um to do uh including physical therapy starting out that was just like completely

02:01wrong for me. Um, now I'm doing much more light physical therapy and that's much better for these

02:06types of conditions. I have been to five doctors in the past two weeks and one of them mentioned

02:15tethered cord syndrome. Um, I and I understand that the other one was mentioning spinal stuff

02:25so I'll give it two out of five. Um, so two out of five knew what that was when I have all the

02:34symptoms of it. Just understand that like top institutions, top doctors, you think they're smart

02:40they have all these accolades, you think you're trusting them, you think you're doing the right

02:44thing, your insurance covers them, um you might even been suggested them by your insurance.

02:51You are having confidence in a system that is broken and doesn't operate that way. That's not

02:57how the medical system operates. You have to do the research on your own care and find the doctors

03:03yourself.

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