Ehlers-Danlos Syndrome: Young Kiwi teen's fight to be believed | RNZ

[00:00:00]You're trying to fight your own body, but then you have to fight doctors at the same time, which when you're that sick, you really don't have the energy for.

[00:00:07]>> I think we're lucky that Rachel was a go-getter and nothing's going to stop us sort of thing.

[00:00:12]If she was a a weaker type person then would have would have been burying her, I think.

[00:00:23]>> Go Rach.

[00:00:26]Go Rach. Go Rach.

[00:00:27]>> Yes, Rach.

[00:00:29]>> 4 years ago, Rachel Witherley was on top of the world. A talented footballer from Whakatane playing in the United States on a scholarship.

[00:00:38]>> Pretty strong and athletic. I was in the States on a soccer scholarship studying and playing >> [music] >> soccer basically every day. And yeah, definitely built as an athlete and running around, lots of endurance. Not sick, not nothing to do with food. Yeah.

[00:00:52]>> Sounds like you're living a dream back then.

[00:00:54]>> Yeah, I really was. All the hard work in high school paid off.

[00:00:57]>> Then everything changed. Rachel became desperately ill. Her dad, Pete, watched on helplessly.

[00:01:07]>> It hit when she's way in America and she's broken.

[00:01:12]And we couldn't fly there through COVID and all that sort of stuff. So, it was all bad timing.

[00:01:17]You know, you just couldn't do anything.

[00:01:21]And you first time she come back home she was a mess. She was like picking up a rag doll.

[00:01:28]And that was very hard.

[00:01:30]But Rach being Rach, give me some give me some medicine. I'm going back again, you know.

[00:01:35]So, we sent her back again and we still couldn't when she got crook again, we still couldn't go over.

[00:01:41]And it just destroyed us. And when we finally got her back, so it was that was nightmare.

[00:01:49]>> Can you just list what did doctors think was wrong with you?

[00:01:52]>> They thought it was a stomach infection, H. pylori, and gastritis.

[00:01:56]>> You had more tests, more investigations, and they thought it might have been Was it Crohn's? No.

[00:02:01]>> Crohn's disease.

[00:02:02]>> Crohn's disease.

[00:02:04]It wasn't.

[00:02:05]>> Yeah.

[00:02:05]>> What Then you got really sick at one point, and you were admitted to hospital. What did they think you had then?

[00:02:11]>> They were saying anorexia until we had health psychologists come and review me, and they cleared up. I didn't have one.

[00:02:18]>> She was certain her illness wasn't psychological. Desperate to find answers, she went searching for solutions outside the public health system.

[00:02:27]>> I connected with a bunch of people, and they sent me in the right direction to Chris Holdaway.

[00:02:32]And yeah, he said your symptoms align.

[00:02:34]We'll get some tests to see if you actually do have them. We got those, and yeah, turns out I didn't have them.

[00:02:40]>> You went back to the hot public hospital and said, "Look, I've got these confirmed diagnoses of vascular compressions." What happened then?

[00:02:46]>> Um they refused the diagnosis.

[00:02:49]>> Rachel has hypermobile Ehlers-Danlos syndrome, more commonly known as hypermobile EDS. It's a connective tissue disorder. She was also diagnosed with several abdominal vascular compression syndromes. Some doctors said she needed life-saving surgery to fix them. Yet others said this diagnosis doesn't exist.

[00:03:11]>> [music] >> To complicate matters, the surgery could not be performed in New Zealand, meaning her only option was to seek treatment overseas.

[00:03:20]>> What was it like not being believed?

[00:03:22]>> Um >> [music] >> heartbreaking.

[00:03:25]It's very upsetting. You're trying to fight your own body, but then you have to fight doctors at the same time, which when you're that sick, you really don't have the energy for. And [music] yeah, it gets really upsetting, and it's upsetting for the whole family as well.

[00:03:39]>> By now, Rachel could barely eat. She depended on a feeding tube to stay alive. Her parents watched helplessly.

[00:03:48]>> You see your girl going through hell, and these guys just don't listen.

[00:03:52]It's like, "Okay, if you can't fix it, that's fine.

[00:03:56]Tell us where to go. Just tell us where if if I got to fly to the moon, we'll fly to the moon."

[00:04:01]But they just don't say nothing.

[00:04:02]>> Yeah, just even just give us Yeah, just give us a step, like >> So, >> which direction to go.

[00:04:09]>> That direction ended up being Australia.

[00:04:12]Rachel found a surgeon willing to operate. It cost tens of thousands of dollars, but she'd run out of options back home.

[00:04:20]>> The best decision we ever made.

[00:04:22]>> What would have happened if you >> [music] >> didn't have an option to go overseas?

[00:04:25]What do you think you'd be here to like today sitting here talking to me?

[00:04:29]>> Probably not, yeah. We weren't able to get help with my feeding tube before surgery. So, as soon as they pulled that out, I was yeah, going to be on the downside.

[00:04:38]>> Rachel had major surgery to fix two vascular compressions. Now, almost a year on, her life is back on track.

[00:04:47]>> So, you had two compressions surgeries.

[00:04:50]>> Yeah.

[00:04:50]>> Tell me, how do you It's now almost a year since you've had your surgery. How are you feeling?

[00:04:55]>> Oh, way better. I'm in low pain, like none of that now. My blood pressure is starting to improve. My POTS symptoms are nowhere near as severe as well. Got color back in my face. I'm starting to get back into football, going to the gym. Like, I'm like a whole different person.

[00:05:20]>> So, what would you say to Health New Zealand if [music] you could sit down with them?

[00:05:25]They They didn't believe in your diagnosis that you obtained privately.

[00:05:29]They didn't offer you any treatment here in New Zealand.

[00:05:32]>> [music] >> You had to go overseas at your own cost to get treated.

[00:05:36]You're feeling [music] so much better today for it. What would you say to them?

[00:05:40]>> Um Remind them that I'm a human being and I have my own life that I want to be able to do and live. [music] So, I'd like them to just be straight-up with the answers and not ignore it.

[00:05:52]But, yeah. I just kind of want to pull the finger at them.

[00:05:56]>> I think we're lucky that Rachel is a go-getter and nothing's going to stop us sort of thing.

[00:06:01]If she was a >> [music] >> a weaker type person, then we'd have would have been buried, I reckon.

[00:06:07]She just gets going with it and that's what she's having the other girls now, you know.

[00:06:11]>> And there are many others. Sadly, Rachel's story is not an isolated one.

[00:06:17]Throughout this investigation, I met dozens of young women desperately ill, surviving on feeding tubes, starving while doctors debate what's making them sick.

[00:06:29]Rachel eventually found treatment, but many others never make it overseas.

[00:06:35]>> We're all humans. We've got our lives.

[00:06:38]We [music] just need help. If they won't do the surgery, they should try to keep us stable as possible, not put our lives on the line just to help us support us >> [music] >> to go overseas to get the surgery we need. But, overall, we would like to get the surgery here and not have to try fork out all the money and fight the doctors just to keep us alive.