Dunstable mum who campaigned in Parliament for NHS help talks about life with Ehlers-Danlos Syndrome
Alex Akitici was diagnosed with EDS nine years ago, and has been collapsing regularly ever since. In this video, she talks about how she lives with the condition as she goes to Parliament with MP Andrew Selous, campaigning for more help through the NHS.
Video copyright: Skewb Ltd
Video copyright: Skewb Ltd
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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.
10:55 Yeah.
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11:13 Yeah.