00:00 For me, this is my reality.
00:10 Collapsing frequently, but never knowing when it's going to happen.
00:13 I can't stand up and stand still as it could trigger a collapse.
00:23 I'm Alexandra, I live with Ehlers-Danlos Syndrome and this is my story.
00:29 My life before EDS, I was very independent.
00:32 I used to, with work, I used to go around London meeting with local authorities, discussing
00:36 Section 74 charges, going to hawk events, all that sort of stuff.
00:42 I really enjoyed going out and doing all that type of work.
00:45 I had a few health issues.
00:47 When I was younger I had unexplained bruising, which they never got to the bottom of.
00:53 I was hospitalised twice with stomach problems.
00:57 Again, they didn't know what the cause was.
01:01 I ended up with a feeding tube and then over time I then got better.
01:08 The first real severe symptom was collapsing, which was on the 19th of January 2015, because
01:15 it was the day before my husband's birthday, which is why I remember it.
01:19 I picked my children up from the child minder and drove home.
01:25 Didn't feel that great, so I went up to bed and I got up to go to the toilet and collapsed.
01:32 I didn't know what was going on.
01:35 I hadn't fully collapsed and I tried to get back up and then I collapsed again, but that
01:40 time I lost consciousness and my husband got quite worried.
01:45 Once I came round, he wanted to take me to the hospital, so he did.
01:50 I thought I was dying.
01:52 When I was in hospital, when I first went into hospital, I thought there was something
01:56 severely wrong with me because I couldn't understand how your brain can just switch
02:01 off.
02:02 I couldn't understand how that was happening to me.
02:04 It was absolutely terrifying.
02:07 Before I got my diagnosis, I'd never heard of Ehlers-Danlos Syndrome.
02:11 I now know that Ehlers-Danlos Syndrome is a connective tissue disorder.
02:16 There are 13 types and I've been diagnosed with the hypermobile Ehlers-Danlos Syndrome.
02:23 I have symptoms of allergies every day, all day.
02:30 I have to take very high doses of prescription antihistamines every day.
02:35 I have to take 16 capsules of a drug called sodium chromoglycate, which is a mast cell
02:40 stabiliser every day.
02:43 I use eye drops, antihistamine eye drops, all the time because the worst part is my
02:49 eyes, they really itch and they're really, really sore.
02:53 Your blood vessels can also be affected.
02:55 They can be too lax because it's a connective tissue disorder.
02:59 So your blood vessels can be too lax and then they don't pump your blood as efficiently
03:04 as they should, so it can't get to your brain quick enough and your body's natural reaction
03:10 is to put you flat on the ground to get the blood to your brain.
03:14 From the minute I get up, my life is a permanent risk assessment.
03:18 Everything I do, I am assessing the risk as I'm doing it because if I fall incorrectly
03:24 or fall anywhere that there isn't enough room, I can injure myself.
03:32 I have injured myself many times and the problem that I've got now is that due to the frequency
03:40 of collapse and the times that I've collapsed, my whole body is agony.
03:46 So when I collapse now, it's a lot harder to get back up and feel okay.
03:52 I've currently got a shoulder separation injury where my bone is sticking up.
03:59 I recently cut my knee open.
04:02 I'm permanently bruised, but that's because obviously I'm collapsing.
04:07 And I've also broken my thumb, toes, and I've collapsed down the stairs twice, which caused
04:13 quite a lot of friction burns.
04:17 Unfortunately, if I sit for too long or stand, the blood pools in my feet and the lower parts
04:25 of my limbs go blue.
04:27 The blood is pooling and therefore is not getting to the brain quick enough and this
04:31 can trigger a collapse.
04:33 I've collapsed hundreds of times over the last nine years.
04:37 I never know when it's going to happen or how frequently.
04:42 Even during filming, I collapsed.
04:57 After a while, I can start to hear, which is horrible because although I can hear, I
05:04 can't respond, I can't move.
05:05 I'm trapped inside my own body and it is every time, it's horrible.
05:11 And every time I just hope that I come back out of it.
05:25 I can hear if I'm out and people are panicking and wanting to call ambulances.
05:32 So therefore I always have a member of my family with me to explain that I don't need
05:37 an ambulance.
05:39 But it's very, very distressing to hear it and not being able to respond to it, being
05:46 trapped.
05:47 It's horrible.
05:48 I passed out and fell off the chair.
05:59 My husband still can't get used to it.
06:01 He still finds it very stressful every time I collapse.
06:05 And my daughter, I went to her school when she was 11 and we were crossing the road and
06:15 I collapsed and I was in the road and she had to pull me out, which was very distressing
06:20 for her.
06:21 So it's not something that I don't think they will ever want to get used to, but they are
06:28 now aware of what happens and what I can and can't do.
06:34 I've been made to feel awful.
06:36 So after five years of collapsing, I applied for a blue badge just to help with, because
06:44 getting in and out of the car if I collapse, there's more room.
06:48 Also toilets, because a normal ladies toilet is quite narrow.
06:53 You've got a toilet roll holder on the wall.
06:56 If I collapse, if I hit my head on that, it can be quite damaging.
07:00 So using a disabled toilet, you've got a lot more room to manoeuvre.
07:03 And if I do collapse, which I have in the toilets a few times, there's a lot more room.
07:09 So again, I can risk assess and make sure I don't hit myself on anything.
07:16 And I've come out of disabled toilets and people have made comments or made me feel
07:21 like I'm doing something wrong.
07:23 And I remember very clearly a couple of years ago, which was one of the reasons I started
07:30 raising awareness of Ehlers-Danlos and invisible disability, I came out of a disabled toilet
07:35 in a store and a lady looked at me and was about to say something and I collapsed flat
07:42 out on the floor and she ran.
07:45 But the way she looked at me, the first thing I did when I came round was burst out crying
07:49 because she'd made me feel so bad for using that toilet.
07:56 And I've also, like when we've parked, you can see people looking at me, walking out
08:03 and thinking, and you can see the way they look at you, that they don't believe there's
08:06 anything wrong with you.
08:08 They then left me in a bed.
08:11 They wouldn't let me get out of the bed.
08:13 I had to use a bedpan because they believed that was best for me because I faint.
08:18 And I thought, right, that's enough.
08:20 I can't live like this anymore.
08:23 I've been campaigning for Ehlers-Danlos Syndrome and last year I presented my lived experience
08:30 to 24 MPs in Parliament and then after that we went to Downing Street.
08:35 But at Downing Street I had a camp chair so that I could sit while I was waiting to go
08:41 to the gates of Downing Street.
08:43 But as I got up off the chair, I collapsed outside Downing Street and I was with some
08:51 doctors that specialise in EDS and care for it.
08:55 And I said to them, what do I do?
08:57 How do I stop this from happening all the time?
08:59 And they said, you need to get a wheelchair.
09:04 And I did.
09:05 Because I've got to the stage where I know that the risks, with all the injuries I've
09:13 got already, it's just there's too much risk in me doing more damage to what I've already
09:19 done.
09:20 I just hope in the future that there is a better understanding within the medical profession
09:26 and that people with Ehlers-Danlos Syndrome can get a diagnosis and they can get the treatment
09:31 they need to try and help people cope with the condition.
09:38 And even though I still collapse, I'm having ongoing treatment and take regular medication
09:48 for my blood pressure, for the migraines.
09:51 But it's taken a lot of doctors and a lot of people to get to where I am.
09:58 And that has all been through private healthcare.
10:03 I would like people to know that it's an invisible reality for people that we may look fine,
10:10 but we're not.
10:11 And underneath, they don't see that my legs are blue.
10:17 And I would just like people to understand that there is so much going on in people's
10:22 lives and you just don't know.
10:24 And to stop being judgmental on things you don't understand.
10:29 I'm hoping that in the future, at least if I can, I mean obviously I have to use a wheelchair,
10:36 but I'm hoping that I've still got a bit of independence where I can move around sometimes.
10:44 That's all I hope for.
10:47 Just to be able to get up and walk around sometimes, pretty much.
10:51 I say that's all I can hope for really.
10:55 Yeah.
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