Giulia's Story: Broadcasting Far and Wide Giulia Bound is known by the public through her job as a sport presenter for BBC Radio Merseyside, covering all sports especially football focusing on Premier League clubs Everton and Liverpool. Giulia was diagnosed with Addison's disease in 2016 after a year and a half of being unwell. Now recovered from this turbulent time, she lives a full life with Addison’s. So what is her secret? How much extra cortisol is needed for interviewing football legend Jürgen Klopp? Pippa from the ADSHG meets Giulia to find out more (hint, it involves Pepperoni, Star Wars and always being prepared!) I meet Giulia over Zoom, with her having just returned from covering the FA Cup Final in London and before she heads off to France for the Champions League Final. Covering sport for radio is certainly a busy job! She’s friendly and welcoming and immediately from speaking with her, her diagnostic journey sounds like one sadly many of us can all relate to. So what was going on before her diagnosis? “I hadn’t been right for a good few years, I knew in my gut there was something not right. But every time I went to the doctors I was told “there’s nothing wrong with you, you’re absolutely fine”. One of the last times before I was eventually diagnosed, I kept saying, “when I’m walking I feel like everything is spinning and I’m going to hit the deck” and I was told “oh we all get that, its called working and being a Mum” and all that kind of stuff. So I genuinely for a while just assumed I was a weak person.” “But then I came home from work one day very unwell and I was vomiting. I was very tanned, very tanned which I know everyone else was recognise! But at the time I put it down to a recent holiday in Portugal. But this sickness went on for a couple of days, so I went back to the Doctors and when they put me on the blood pressure machine, it was not registering so they said “oh I think there a fault with it” and they just sent me home with vertigo tablets. Of course I ended up being in a horrendous way at home.” After finding herself on her living room floor one day, not remembering how long she’d been there or even how got there, she went back to the Doctors, now wanting to mention how she had an even darker tan was definitely was not due to sunshine as she had spent a week in bed with the curtains shut. But Giulia collapsed on the way into the Doctors and had to be carried in by a kind passer by. This time fortunately she saw a new GP who said: “I’ve never seen this before but I think its something called Addison’s disease.” An ambulance was rung and Giulia was admitted to hospital. Giulia’s comments: “After being pumped full of the steroids and everything else they pump you full of I just remember thinking, I can final breath again, I feel like I can properly get my breath” - an experience her body had been struggling with for far too long. How did you feel after being diagnosed? “Partly shock but actually I was just relieved to know it wasn’t in my head. Although I was told “you can never forget to take your tablets because you’ll die, we can’t cure it and you’ll have to adapt your lifestyle” - that didn’t bother me because I just remember thinking “I’ve not gone round the twist!” Before diagnosis Giulia tells me how she started to shut herself off from life because she’d been ill for such a long time so she explains the diagnosis: “felt a bit freeing in a weird way.” She goes on to explain: “But then after a while the mental side kicked in more and I did then think oh my god I just nearly died. So it felt very dramatic. Even when I was in the hospital it was odd because none of the healthcare professionals had heard of it." "I had lots of consultants doing bloods and things because they were saying they wanted to learn and meet someone with Addison’s. At one point I had lots of students lining up and I felt like J Lo because everyone wanted to talk to me!" Giulia showed great resilience when coming to terms with the physical and mental effects of a new diagnosis having been so unwell. She came out of hospital on her son’s 7th birthday which she told me she was adamant about. “I still felt quite angry that it had got to that point, especially as at the end when the GP sent me home again, it could have ended so differently. I wasn’t angry that I had Addison’s, I get that things happen and I always know that there is someone far worst, but I was angry with the medical profession. I felt I couldn’t trust them, I hated going to appointments. Now I’m very fortunate that my Endocrinologist is incredibly understanding. One of his first comments was that I should join the ADSHG for support as well as for information so I went home and printed off all the ADSHG publications!” Giulia chose to change GP surgeries and her new GP was brilliant, learning about the rare condition from Giulia and with the ADSHG publications. This is a difficult move many of us will have been through. “I don’t think I’m ever fully over it. It being missed. Being ignored. But I’ve worked out better ways, I’ve had some hypnotherapy because I would get so stressed about appointments but now I feel like I can articulate myself a lot better at appointments because I’m a lot calmer.” Recovery When recovered, Giulia got into action telling me she cleared a kitchen cupboard for her medication, getting Tupperware boxes so she could easily see and access medication. She tells me she has a plastic folder full of print-outs of the ADSHG publications and guidelines. “Having it there, even though hopefully I’ve never need it, it gives me confidence. Being confident in yourself in knowing how to deal with it and being confident in your family or friends, knowing they know what to do." Physically Giulia had lost a lot of weight and was off work for about 3 months. She also had to adjust to the energy pacing side of Addison’s which can impact those around us as well as ourselves as she explains: “It’s hard for other people - that’s been a big learning curve. If I have to say “no I don’t think I’m up to that” people can feel quite put out, but it’s not because I don’t like you or don’t want to spend time with you. I think if you’re well and you don’t take tablets every day, people aren’t going to understand. I describe it as only having so many blocks, I have to assign each block to something and if I don’t have a block left over, I can’t do it.” Giulia’s block explanation is brilliant and represents the Spoon Theory, as an explanation for managing energy pacing. She has a great support system around her, with her Mum also being an ADSHG postal member so she too keeps up to speed with what life with Addison’s feels like and the latest medical news. Surgery and building back confidence 18 months after Giulia’s diagnosis, she was back in hospital for an operation. Understandably she was worried but she tells me the hospital was brilliant, telling her they didn’t know about the condition so wanting to talk through the ADSHG guidance with her. At the pre-operation appointment Giulia gave them the ADSHG surgical guidelines and she also met her anaesthetist so they could talk it through. "This gave me so much confidence that everyone then knew what they were doing. I remember after the operation when I came round, the first thing I said was: “are my steroids still going in!?!” It felt so different to the other ways doctors had treated me, which is why I’ve started talking about Addison’s publicly because I wanted to raise awareness." Opening up Her loved ones and work colleagues were very supportive and all knew from the start where her steroid card and injection kit were in her purse. So having Addison’s was never a secret but opening up to the general public is a different ball game (no pun intended!) Very honestly Giulia shares: “I speak on air and people know about my life, as much as you choose to tell them. But I go to the football clubs and interview players and managers and I didn’t’ want to be any different. As a woman in sport, it can be hard to fit in, and I think initially I didn’t want to be a woman in sport with a disability as well – I don’t know what it was really.” She tells me it was one particular tweet from the ADSHG Twitter account that made her decide she was ready to share she had Addison’s on her own Twitter account. She recalls: “I thought, you know what, this is nothing to be ashamed off and I’m not ashamed of it. So I put it out there hoping it might mean a doctor or nurse sees it, or someone else with Addison’s who isn’t as confident with it or feels overwhelmed, and just so people in general know what it is!” Giulia aka @GiuliaBould tweeted: “Many people don't know I have Addison's disease. It means my adrenal glands no longer work. It's very rare & incurable. I say "I'm kept alive artificially" thanks to a mix of steroids several times a day. But when we become ill/stressed it can be fatal.” People immediately got in contact with Giulia showing their support. “Afterwards listeners contacted me saying all these years they had listened to me and they would never know. I think as people with Addison’s we all get quite good at hiding being sick. So maybe it’s all about making being sick look different. You never know what is going on with people. It doesn’t mean it has to stop you doing things, you just have to do it in a different way.” Giulia and I agree dealing with an illness on top of daily life is no weakness, we believe it makes you stronger. You get through the day taking into account so many more factors and adapting them, often without anyone else knowing. This takes great strength and is something every person with Addison’s should be proud of. So I ask what her secret is: how does she manage and balance a demanding life and a serious disease? She laughs: “I’m very strict and structured on tablets, helped by alarms on my phone. I have tablets EVERYWHERE! And when I go away my colleagues also carry some of my tablets too in case I loose my bag!” Having had Coeliac since the age of 13 and also having had an overactive thyroid which was eventually removed, Giulia is used to balancing medical conditions. “But I struggle with the brain fog, I don’t like that, and I know it’s a sign I need another dose. When I interviewed (Liverpool F.C. Manager) Jürgen Klopp face-to-face in the training ground, I knew that would be a stressful thing for me to do and I wanted it to be right and I’d done lots of prep, so I double dosed. But when I’m having a quiet day at home not doing much, I keep my dose low. It all balances out and it’s having the confidence to do it.” She monitors her sleep or if she feels jittery, as she knows for her this is a good indicator of the cortisol not being ‘used up’ by the activity of her day. If someone has a stomach bug or a cold, she is open with them about needed to keep her distance so she doesn’t catch it and her colleagues, family and friends completely respect that. However still frustrated with her brain fog she spoke about this with her consultant and is now prescribed DHEA which she says: “It takes the edge off it. I’m lucky that my consultant listens to me and finds Addison’s fascinating and is willing to try things and learn himself.” Giulia’s other tips include power naps! “I love a power nap! Or even just a rest. I know it’s not for everyone, but if I have half an hour I’ll lie down and that rest allows me to do everything else, so it works me. I see on social media people talking about lower back pain, headaches, joint pain and I thought I was the only one! When I have a bad day and I just don’t want to get out of bed it’s like phew that’s not just me!” She’s also found she’s impact more by noise now: “I get drained from sense, a lot of noise, things to look at – maybe it’s because I work in the radio so have headphones on all day or I’m at a football ground – but this impact of having Addison’s was a surprise for me. So I don’t watch as much telly anymore. When I went to Disney Land in America I contacted them before to tell them about my Addison’s and they were amazing. They gave us virtual queuing so I didn’t have to stand as much and it made the experience so much better and manageable.” “We’ve all got to do things, life happens, stuff happens, so you’ve just got to do what makes you feel good.” How do you prepare for potentially being under the care of the hospital systems in the countries you’re visiting or staying in? Giulia always take with her all the information needed to show at airport security for her kit (Dr’s note etc). This is part of the folder she carries which she’s prepared from the ADSHG website, which include the adrenal crisis guidelines in the language of the location she’s travelling too. She also has two lots of her medication, one for her hand luggage and another for her case. “It feels like a lot to prepare but it really isn’t. Now I’ve done it, it’s all ready to go and it’s only making sure I have right the language in there. So I grab my folder and off I go!” What would your advice be to the newly diagnosed Giulia? "Don’t panic! Take your time to get back on your feet. Look at what works for you and it’s trial and error. Take a sleep if you need it. I pencil in days where I can have a day to myself so I can recharge. You will work out what works for you, we’re all slightly different. Read through all the stories from the ADSHG. I remember being home from hospital and would read little bits on the website and then come back to it so I didn’t feel too overwhelmed. I accept some days I will feel awful but other days I will feel fine. Oh and be organised!” If having Addison’s has given you something worthwhile, what would it be? Laughing she jokes: “being allowed to get back into bed when I want!” "It’s made me understand my body and I trust my instincts a lot more because I knew something was wrong. I do trust my body even though obviously it’s not right as I have Addison’s, but I listen to it so I know when I’m low on cortisol and how much I need. It’s like a sixth sense knowing how much more cortisol I need." What is your greatest wish for the Addison’s community? Number one is: “Curing us all!” But Giulia goes on to say: “I know it’s never going to be mainstream, but I think being talked about more within the medical profession - assume it’s Addison’s and then rule it out. It’s rare but that doesn’t mean it’s non-existent. It should be much higher on the tick list. Much more awareness in the medical profession is what I want for us.” “Also the after care. It was pretty much indicated to me, take your tablets and you’ll be back to normal. And I struggled with that because I didn’t take the tablets and return to the person I was. But you learn to adapt to all the other things with it. But that’s scary at first.” How do you carry your injection kit? #ShareYourKit “I got a pouch/box off Amazon and it’s in my bag and always comes with me. Everyone knows it’s there and they know to pull out the ADSHG steroid emergency card if I’m unwell and that it has the instructions on it.” “I’ve only had one adrenal crisis since diagnosis due to having a stomach bug. I was really surprised by how quick I went down, my god I went down fast. And that still really worries me so that’s why I’m strict with everything. I know that might upset some people, but just be strict with being prepared and then everything else takes care of itself.” How do you spend your free time? “With my 13-year-old son! A lot of time it’s driving him to football, cricket and all that kind of stuff! Me and my son love going to the cinema, we love all the Marvel films and we’re massive Star Wars fans. Disney+ is Addison’s diseases best friend because if you’re having a bad day, there’s always something on Disney+! My son understands, he’s very sweet and knows all about it." “My job is also very sociable; I like football and I get to go to football which is very lucky. I like going for a meal with friends, sometimes I deliberately go for lunch with friends instead of an evening meal – the last thing I want is a meal at 8pm! I love to spend time walking with my dog and I also own too many face lotions and face masks!” Of course we had to ask, what is your favourite salty snack?! “Pepperonis! When I was undiagnosed, I would go and buy the family packs and eat the whole lot! Even though they stink (!) I love them. If I’m having a bad day I’ll always have them as I’m not into crisps. It’s purely medicinal! I now buy the mini ones and keep them in a little box in the fridge. I might go quite a few weeks and I haven’t eaten one because I’m fine but if my levels dip and I can’t get them quite right then it’s salt. I just need salt!” “When I was undiagnosed, I used to get (and I’ve tried it since and I can’t stand it, so it shows how much salt I needed) the Baxter’s Chicken Broth tins and add a handful of rock salt, and I still couldn’t taste the salt. I now always put extra salt on everything I eat.” Giulia is normally the one who asks the questions so thank you Giulia for letting us interview you and thank you for sharing so honestly your personal experience with Addison’s. Giulia is clearly passionate about using her platform to help raise awareness in the medical profession, as well as to help improve the diagnostic odyssey of Addison’s. She is an advocate for the benefits of linking up with others who have the disease and learning from one another (I’m certainly adding peperami to my next shopping list!) Giulia Bound is known by the public through her job as a sport presenter for BBC Radio Merseyside, covering all sports especially football focusing on Premier League clubs Everton and Liverpool. She’s passionate about supporting women in sport and actively backs the Her Game Too organisation which aims to stop sexism in football. She is Mum to one amazing 13-year-old boy and a dog-mum to a 1 year old Jackapoo called Po! Follow Giulia on Twitter and listen to her on BBC Merseyside Sport Fridays 6pm. Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! 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