A mum from Ashford needs life-changing surgery after a car accident left her bedbound
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00:00 It was in December, I'd just gone to Tesco to get some carpool for my son.
00:07 I was coming round the junction to Ring Road.
00:11 I stopped just past the traffic lights for an ambulance.
00:15 The guy behind me I only paid attention to, the traffic lights being green,
00:20 and went into me at about 30 miles an hour I think.
00:26 Initially, adrenaline took over and I got out of the car,
00:32 had a bit of a panic but didn't feel too bad.
00:36 Following that, the next few days I noticed that I couldn't keep my head up.
00:41 I had quite a severe case of whiplash.
00:46 Then following that I started having all sorts of serious neurological issues,
00:52 like shaking quite violently, pressure in my head which was absolutely unbearable.
01:01 It would get to the point where I'd have such double vision that I couldn't see.
01:06 I kept going to A&E over and over again, but all they did was treat me for a migraine.
01:14 I then had an episode of five weeks of high pressure in my brain,
01:18 and it is the worst thing that I've ever been through.
01:21 I had a really severe weekend and then on a Monday morning,
01:26 clear fluid started pouring out of my nose, like clear salty fluid.
01:31 I just so happened to have an appointment with Dr. Newman at the William Harvey on Thursday.
01:40 By this point, after losing the fluid, I started feeling better.
01:45 She was an absolute life saver for me and I told her what I was going through.
01:50 She said, "Oh my God, Louise, I think you've got Ehlers-Danlos Syndrome,
01:56 I think you've got cranial instability, you've just had a bout of intracranial hypertension
02:01 and now you've got a CSF leak."
02:04 For the first time I felt validated, and this was about 18 months after the car accident.
02:11 I had an upright MRI and was told about doctors in Barcelona
02:18 that diagnosed these conditions and I've had a second opinion.
02:24 There's two doctors in Barcelona that agree with my diagnosis,
02:30 which are cranial instability, cerebellar ectopia, intracranial hypertension and CSF leak.
02:39 It's one of them that is going to do my surgery, it's going to be life changing for me.
02:49 There is no one in the UK that does this operation on people with Ehlers-Danlos Syndrome
02:55 and they don't fund it either, so we've got to self-fund.
03:01 So the surgery itself is available in the UK and they do the surgery here in the UK,
03:10 but as Louise said, not with someone with complications like the Ehlers-Danlos,
03:15 it's something that is a massive contributing factor I think, isn't it?
03:19 Yeah.
03:20 Louise can't really drive, she struggles to walk more than a few metres,
03:26 so we've had, I think we're on wheelchair number three or four now.
03:31 We've got adaptations to the home, so we've got a wet room, we've got a stair lift.
03:36 All those things really pale in comparison to the effect that it has on that day-to-day life.
03:41 Louise can't spend time with her children on her own,
03:44 struggles to cook for herself, let alone anyone else.
03:49 Just normal everyday stuff that we take for granted.
03:55 I can't do a school run, as much as that used to be mundane
04:00 and something that when it's raining really hard you don't really want to do,
04:05 but I miss stuff like that massively.