How I got my Ehlers-Danlos Syndrome diagnosis - EDS Awareness Month

May is EDS Awareness Month and so, because I have EDS, I wanted to write a post to help people understand a bit more about Ehlers-Danlos Syndrome. I’ve already written about my Invisible Illness Story, what it’s like Living with Digestive Problems and about Week One, Week Two and Week Three on the Stanmore Rehabilitation Programme. So I was trying to think of something different I could talk about this month. I asked around a few friends, some Facebook groups and also on Instagram, and one topic I was asked about a few times was ‘How did you get your EDS diagnosis?’ The short answer to that question is “With great difficulty!” And so, because of the length of time and immense struggle it was for me to get the correct diagnosis and the fact I know a lot of people go through the same problems, I felt it might be a helpful story to tell you. 

I should probably start by saying there are lot of different routes to being diagnosed with Ehlers-Danlos Syndrome Hypermobility Type and so this post will only document my particular route and symptoms. I also need to include that I’m by no means a medical expert – I’m simply a person who has the condition and therefore has a lifetime of experience on looking for answers! My journey to diagnosis spans 25 years, but I truly believe it shouldn’t need to take this long and so by educating medical staff and people with symptoms, the journey to diagnosis should be much easier.

My story starts on the day I was born, although we didn’t realise it at the time. When the doctors came to do my newborn checks, they realised I had Developmental Dysplasia of the hips (DDH), which basically meant the ball and sockets of my hip joints hadn’t formed properly. This caused my hips to dislocate when I moved, and was treated with a fabric splint known as a Pavlik harness. I wore this continuously for a number of months and according to x-rays, my hips finally developed to a normal position. However, despite them appearing normal on x-rays, I have always had issues with my hips dislocating and subluxing (partially dislocating). It was just put down to being ‘one of those things.’ 

This saying soon became quite a big part of my life. As a very young child I started having problems with urinary retention, but my parents were told that girls couldn’t go into retention (completely incorrect) and again, that it was just ‘one of those things.’ I would often end up in A&E with painful joints and muscles, but these were always diagnosed as sprains and strains and I was just labelled as being clumsy (and probably a bit of a hypochondriac). Throughout my childhood I had all sorts of apparently random symptoms and problems, which, of course, were always ‘just one of those things.’ And so, because my doctors didn’t show any concern, neither did we. That was until I hit the age of 15.

At this point, my symptoms started getting a lot worse. I was exhausted and in pain all the time, was having all sorts of strange problems with my digestive system, my heart was always racing, I felt really faint and it felt like every day something else was going wrong with my body. My GP was my first port of call, and they ran some basic blood tests and sent me for an ultrasound of my abdomen. These all came back clear and as my symptoms continued, my GP referred me to a paediatrician and gastroenterologist. They ran a few further tests (more bloods, a barium swallow and I think a brain MRI). But the tests were all coming back normal, despite my worsening symptoms. As time went on, we still had no answers and the gastroenterologist stopped seeing me because they thought I ‘just’ had IBS (Irritable Bowel Syndrome). In the end, my Dad started doing some research into my symptoms, and came across the condition M.E. He asked my paediatrician if she thought I might have it, and her exact words were, “Well if you believe in that then we’ll call it that if you like.” Not helpful in the slightest and she was completely misinformed about M.E. Still, that’s the diagnosis I ended up with.

The M.E. diagnosis pretty much put a stop to any further investigation of my symptoms, and I was referred to the children’s mental health team (again, even if my symptoms were all caused by M.E. a physical health doctor really should have looked after me!) The next few years were difficult – with very little support for my physical health and with worsening mental health because of this, I ended up in a psychiatric hospital. No one was interested in my physical symptoms – I was either told they were psychological or all down to having M.E. This made it incredibly difficult to get anyone to listen to me. Then in 2012 I became very unwell. My digestive symptoms suddenly got a lot worse – I was losing a lot of weight and went downhill very quickly. I had various tests including a stool sample, gastroscopy and colonoscopy, as well as various scans, but no answers were found as to what was causing my problems. I ended up being admitted to hospital for tube feeding and further tests, but when no answers were found it was all blamed on psychological problems. This led to a mental health crisis and I was sectioned.

It was only after I spent a couple of years getting my mental health back on track that I finally found a GP that took my physical health problems seriously. Without her input, I’m honestly not sure where I would be today. I had been doing some research and talking to some friends, and at the same time, my GP had a friend with EDS who she had been talking to. The key moment was when I went into hospital due to problems with my gall bladder and the nurse happened to leave my notes on my bed with me. So of course, me being the nosey person I am, I decided to have a flick through! I came across a report from when I was very little – probably under two, in which a doctor had written that he believed I could have a connective tissue disease. I immediately contacted my parents and asked them about it – they had never been told anything about this. So we took the information to my GP, along with some of the research I had been doing, and that was the start of me finally getting some answers.

Rheumatology referral

The first thing my GP did was to refer me to a Rheumatologist at my local hospital. Before my appointment, I did quite a lot of research on EDS UK. I know there is often some question of whether you should research symptoms online and take them to your doctor, but I firmly believe this helped me to have a productive appointment with both my GP and my rheumatologist. There will always be a balance, but I don’t see being informed about your symptoms and (possible) diagnosis as a bad thing. I made a (rather long!) list of all my symptoms and my medical history, and even before I saw my consultant I suddenly felt like everything was starting to make sense.

I saw a fairly young rheumatologist and, for the first time, she seemed to really listen to everything I was saying. She asked a lot of questions about what I was like when I was younger (for example, my hip problems, the fact I’ve always been very flexible, my bladder and bowel issues and the fact I was always injuring myself were important for her to know) and then she examined me in quite a lot of detail. One of the diagnostic criteria is something called a Beighton Score, which assessed your level of hypermobility across the whole body. I believe my score was 9 out of 9, so I couldn’t be more hypermobile if I tried!

However, just because you score highly on the Beighton Score doesn’t automatically mean you have Ehlers-Danlos Syndrome. People can be hypermobile without it being diagnosed as EDS. The diagnosis comes from a whole range of observations and history including a high Beighton Score and then two or more other features from a pretty long list. This list includes things like having soft or velvety skin, a certain type of scarring, prolapses, arm span being longer than your height, positive family history and a whole host of other symptoms. My Rheumatologist ordered a few more blood tests, but gave me the diagnosis of Joint Hypermobility Syndrome. At the point of me being with diagnosed with this, it was still a valid diagnosis. However, I thought I should point out that the diagnostic criteria have now been updated and the names have been changed.

Gastroenterology and Cardiology referral

A diagnosis from a local Rheumatologist can be the end of some people’s journey if their symptoms aren’t too severe or affecting their life too much. However, a lot of people with EDS will have multi-systemic and co-morbid conditions that require further diagnoses and treatment. As my digestive and cardiac symptoms were the most difficult for me at that point, I was referred to local consultants for both of those problems. All of a sudden, having a new diagnosis seemed to get other doctors actually listening to me and taking me seriously. Both doctors ran a few tests, but it soon became evident that I needed more specialist input, and so I was referred to a couple of London specialists. 

London specialists

I don’t want to go into too much detail about every single specialist I was referred to, because we’ll be here all day! But my most important referral (as far as I’m concerned anyway) was to Professor Aziz, a neurogastroenterologist that specialises in digestive problems in people with Ehlers-Danlos Syndrome. I was so nervous about seeing him because up until then, no one had really taken my digestive problems seriously. But he was one of the best doctors I have ever seen. He and his team went through the examinations again, and changed my diagnosis from Joint Hypermobility Syndrome to Ehlers-Danlos Syndrome Hypermobility Type. They also ran some more specialist digestive system tests and after years of no answers, I was finally told that, most likely due to my EDS, I had Gastroparesis and Intestinal Dysmotility. If you’re interested to hear more about the other diagnoses I have received alongside my EDS, please do let me know and I’d be happy to talk about those more.

Royal National Orthopaedic Hospital Stanmore

I thought before I finish this post, I should include a small mention of my time at Stanmore. I was referred here by one of my local consultants, as they specialise in EDS and particularly in managing pain. The referral process was long and difficult due to it being so popular, but I was eventually seen by one of their Rheumatology consultants who spent over an hour with me. We went back over my whole medical history and she redid the Beighton Score, as well as a whole host of other examinations. They were able to confirm my EDS diagnosis and referred me to the three-week pain management programme, which I wrote about last year. They are also able to refer people for things like genetic testing if they believe you may have a different type of EDS. 

I’m really sorry this has been so long! I really hope it might be helpful to anyone that’s starting the diagnostic process, but also hope it will be interesting to those of you that don’t know much about EDS. If you have any questions at all, or would like to see me write about something in the future, please do let me know, as I’m always interested to hear your requests! And if you’d like to share this with anyone I would really appreciate it, as the more awareness we can raise this month (and beyond) the better.

Do you have a diagnosis of EDS or are you trying to get one? Have you found my story helpful? 

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Why Coronation Street's storyline about suicide is so important

*TW – Discussion of suicide that some people may find triggering

The storylines on Corrie recently have been nothing short of hard-hitting. With Bethany Platt’s grooming, David Platt’s male rape and Pat Phelan’s reign of terror, we’re definitely seeing a darker side to one of Britain’s best-loved soaps. But their latest storyline that saw character Aidan Connor (played amazingly by actor Shayne Ward) take his life has had a particularly big impact. It’s very rare that I watch a soap and feel compelled to talk about it, but those scenes of Aidan sitting in The Rovers with muffled sounds of everyone around him laughing and joking really resonated with me. I’ve been there, and it’s a scary and lonely place to be. As someone that has both attempted suicide on numerous occasions and has also lost friends to suicide, I felt I couldn’t pass Mental Health Awareness Week (14^th-20^thMay 2018) by without discussing how important Corrie’s latest storyline is. 

Whilst just the act of talking about mental health and suicide is hugely important, especially for a soap that reaches so many people in their living rooms every day, this storyline in particular addressed a couple of elements that I feel are vital for people to understand. Firstly, the fact the story depicted male suicide is a huge step towards addressing some of the largest myths and misconceptions around suicide, and mental illness more generally. Despite people as famous as William and Harry talking about mental health problems, there still seems to be a stigma around men admitting that they are struggling with illnesses like depression or anxiety. 

But according to a report by The Samaritans, suicide is the most common cause of death for men aged between 20-49, and across the UK, male suicide rates remain consistently higher than female suicide rates – most notably five times higher in the Republic of Ireland and three times in the UK. 84 men take their own life each week. That’s 84 preventable deaths every single week. These statistics just can’t be argued with, and show just how big a problem mental illness is, particularly amongst young and middle-aged men (such as the character Aidan Connor). 

Yet there is still such a culture in our society that men should ‘man up’ and not express their feelings. It’s no wonder that so many lives are being lost when a lot of men still feel that they can’t admit to finding things hard or having difficult thoughts. That’s why Coronation Street bringing up the issue of male suicide is so important. Aidan Connor always came across as a very happy, friendly and popular man who had everything together, even if he did make a few mistakes along the way. I expect a lot of men could probably identify with him, and so by exposing his vulnerabilities and the consequences of him not opening up to his family, my hope is that others will realise that it’s OK to talk about your feelings. 

The other element of the story that I feel is really important is spotting the subtle signs that someone might be feeling suicidal. Since the episode aired last week, I have heard so many people talking about how Aidan’s suicide seemed to come out of nowhere. But actually, in retrospect we can see a few small but important signs dating back weeks and even months. For example, there was a point when Aidan gave away his expensive watch to Maria’s young son, Liam. Maria was slightly puzzled by it and took it back to Aidan, but it didn’t cross her mind that this gesture could be a sign of something more serious. And when Aidan went to visit Eva in the cottage, he asked her to dance and told her he had come to say goodbye. Again, Eva didn’t realise that this was Aidan’s way of tying up loose ends and saying his final goodbyes to those he loved.

Like I said earlier in this post, I have attempted suicide on quite a few occasions, so I know how much I kept from family and friends. On the outside, to most, I probably appeared to be perfectly fine. But on the inside and behind closed doors, I was fighting a battle that I felt I was losing. I also know that I didn’t see the signs in the people I loved who sadly took their own lives, or attempted to. Sometimes these signs can be so subtle or hidden that it’s incredibly hard to spot them and someone’s suicide can appear to happen out of nowhere. 

But there are signs that some people display that could prompt us to ask questions about their wellbeing, and I thought it was important to share these with you. So, warning signs that someone could be thinking about suicide include:

·     Always talking or thinking about death

·     Feeling depressed, anxious or withdrawn

·     Displaying risky behaviour such as driving fast, crossing the road without looking etc.

·     Losing interest in things they used to care about

·     Making comments about being hopeless, helpless, overwhelmed or worthless

·     Putting their affairs in order – tying up loose ends, giving away possessions, changing or making a will

·     Saying things like “it would be better if I wasn’t here” or “I’ve had enough”

·     A sudden change from being very sad to being very calm or even happy

·     Talking about suicide or killing themselves

·     Visiting or calling people to say goodbye

·     While self-harm is not directly related to suicide there is research to suggest that individuals who self-harm are more at risk of attempting or contemplating suicide

As you can probably see, a lot of these signs could easily be missed or not given a second thought, and not everyone will display all (or any) of them. But I hope that by sharing these, it will perhaps make people a bit more aware of those around them and will lead to questions and support if you notice something. But bigger than that, I hope that Aidan’s storyline will prompt more people to speak out about their struggles without fear of being judged. And I hope it will encourage more people to simply ask the question “How are you?” or “Are you OK?” and actually stick around to listen to the reply. We live in such a busy world these days, but simply stopping to talk and listen for a few minutes can be life changing. 

Suicide is preventable, but only if we as a society work together to help those that are struggling. Suicide isn’t selfish or an easy way out. It is a last resort for someone who has become so overwhelmed by difficult feelings that they simply don’t know where else to turn or how to carry on. But by campaigning for better support to be in place, from both mental health services, and us, we can make a difference and save lives. And this Coronation Street storyline is another step towards raising awareness of mental health and suicide.

If you, or anyone you know, need someone to talk to, I can recommend The Samaritans. You can call them free any time, from any phone on 116 123and you don’t have to be suicidal to call them. They also have an email address if you don’t want to talk on the phone, although you won’t get an immediate response – jo@samaritans.org

What are your thoughts on Aidan’s storyline? 

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Festival Place Love Fashion Weekend

If you’re a long time follower of my blog, you will probably know that I really enjoy checking out events at one of my local shopping centres – Festival Place in Basingstoke (yup, my last post was about another of their events!) Well last Saturday; I was invited along to check out their annual Love Fashion Weekend and I thought I would share what I got up to with you. I’ve actually been to this weekend twice before – both last year and the year before so I pretty much knew what to expect and knew it was something I would enjoy. I always think it’s a great way to see a selection of the new season’s clothing items and get ideas for how to put outfits together. 

It was quite a cold and rainy Saturday when my Mum and I made our way over to Festival Place. After looking in a couple of shops (as we were a bit early for once!) we took our seats right at the end of the catwalk – a great place to get photos from – and waited for the show to start. 

Gap

The first store showcasing clothes was Gap, which is a shop I’ve only really just started to buy from but wish I’d checked them out sooner! They had a very relaxed and casual vibe, with shades of blue and white on most of the models. The two child models were just adorable – so sassy and cute – they completely stole the show! I recently picked up a beautiful pair of lilac skinny jeans in store, which I’m looking forward to wearing whenever we get some nice weather. And I also managed to finally find a pair of comfy dungarees – it’s only taken me three years!

Apricot

Apricot is a fairly new clothing brand to me. I’ve seen a few of their pieces in New Look stores as a concession, but Festival Place have now opened a standalone Apricot store, which has so many beautiful outfits (and a yummy looking café!) The theme for this walk was very much khakis and jungle prints – perfect for the upcoming summer and matching trends on the London catwalk for spring and summer fashion. I was particularly taken with the palm leaf maxi-skirt (the playsuit was gorgeous too, but I definitely don’t have the figure for it!) But the skirt just reminded me of balmy summer days wearing floaty clothing to try and keep cool. 

Moss Bros

Next up was a chance for the boys to show off the best suits for spring/summer from Moss Bros. These definitely weren’t your standard black or navy suits. Pastel colours ruled the runway with blues and pinks being teamed with loud shirts to bring a more casual and summery look to men’s wardrobes. Florals and palm leaves were on display once again and looked super cool against the muted tones of the two-pieces. 

River Island

Everyone was out to show off the next store, River Island. I used to be a big shopper at River Island, but for some reason it’s not a store I’ve looked in more recently. But after seeing some of the outfits on the catwalk, I will definitely be checking out what else they have to offer. It was all about the slogan tee (when isn’t it!?) across the board, with the little girl especially looking incredibly glamorous. I particularly loved the pink t-shirt with the big glittery lips, so I might be heading over to their website to pop that in my basket!

Lipsy

Lipsy was the next store to show some beautiful dresses, again in different shades of blue. I’m currently looking for the perfect dress to wear to my graduation (eek!) and so, after the show, I went over to Next to have a look at their Lipsy range. Oh my goodness, they have so many gorgeous dresses! I tried this one on and I absolutely loved the print and the floaty material, but unfortunately the style of the halter neck just didn’t suit my body shap, which I was gutted about. So if anyone knows of any similar dresses that I could try, please give me a shout!

Superdry

Superdry is one of my favourite places to shop for things like coats, hoodies and casual wear, so it’s always interesting to see how they style up whole outfits on the catwalk. I particularly loved the dungaree shorts with the pink baseball cap and white and pink rucksack. That outfit was definitely right up my street. I do like the casual look (believe me, it’s what I wear most days!) but I’m still not sure about the socks with sliders! But maybe it’s something that will catch on one day (or just look better on other people than it would on me!)

Towards the end of the show, stylist JP came out to talk to the crowds. I didn’t recognise him at first, as he’s definitely grown his hair and beard since last year! But he was his usual bubbly self, narrating each catwalk and talking about how he’d put each outfit together. 

Marks and Spencer

Then came the finale with Marks and Spencer and some fabulous colour blocking. I always used to be of the opinion that M&S fashion was mainly for the older generation and was rather frumpy. But they’ve really upped their game over the last few years, and I’m buying more and more of my clothes from their store. Apart from the shoes, which were from Quiz and incredibly pretty, the ladies’, men’s and children’s clothes were all from Marks and Spencers’ various ranges. I loved the brightly coloured jeans and coats and loved how they were paired with clashing prints – the outfits just seemed to work. 

This was the first of many catwalk shows of the weekend. I know later catwalks showed some different brands as well, so you’ll be able to see some of the other stores over on my YouTube channel when my vlog goes live soon. 

As well as the catwalk, Festival Place usually put on additional activities for shoppers to enjoy. For the last couple of years, there has been a health and beauty station, where various beauty brands have come to display their latest products and offered customers makeovers and beauty treatments. But this year was a bit different, with a ‘personalisation station’ pop-up with Hand and Lock. The two lovely ladies were offering free personalized embroidery on items bought in Festival Place over the Fashion Weekend.

I couldn’t pass up the opportunity to get something personalized, so my Mum and I headed up to Primark to see what we could find. After a bit of a shopping spree (I’ll be putting a haul up on my YouTube channel!) I also picked up a grey t-shirt with three pink flamingos across the chest. We took it back to the pop-up and chose the font and colour I wanted. The t-shirt was then left with the ladies while we went off to watch another fashion show, and within half an hour I was able to go and pick my embroidered piece up. I decided to go with my name in the bottom corner, and was really pleased with how it turned out! 

Overall, my Mum and I had a lovely day at Festival Place and really enjoyed watching the catwalks and speaking to the ladies from Hand and Lock. Festival Place always seems to put on the best events, and I’m already excited to hear what’s coming up next!

Did you go along to Festival Place’s Love Fashion Weekend? What are your favourite pieces from the Spring/Summer range?

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