Paralympian and Parasurfer Hannah Dines shares her experience with PSC

hello my name is Paula Hanford I am the CEO of psse support psse stands for primary sclerosing colangitis and we are the only UK charity F solely focused on PSC we fund groundbreaking Research into the disease we provide information and support and we advocate for those um those people who have PSC as well it's a really rare disease uh less than 10,000 people in this country have the disease and it's a disease that affects the liver and the bile ducts currently there's no cure never mind effective treatments which is why we are pushing the research

uh agenda as much as we possibly can I'm absolutely delighted today to be joined by T2 I got to read this because it's amazing T2 trike Rider race Runner and surf Hannah dines Hannah is a decorated athlete having achieved silver and bronze medals at the 2015 World Cup two fourth place finishes at the UCI Road World Championships she represented the par Olympics GB at the Rio 2016 Paro Olympic Games finishing fourth and fifth in the trike events she finished fourth of the world um Paris surfing championships and is represent presented England in 2021 2022 and

2023 I think I need to catch my breath after that it's absolutely amazing welcome and thank you so much for joining us today Hannah it's a pleasure thanks for inviting me on I believe you're in Costa Rica tell us about that so yeah so I um finished a clinical trial last year and um so that was brilliant and it me meant I had to be in the UK uh every month and they I can't do any more clinical trials for a while um and I had a Resurgence of my symptoms and I feel and and

so I'm training uh in surfing as we know but I feel a release or I can manage my symptoms more when I do surf a lot especially in a beautiful tropical environment and so I discussed with my doctors and I said there's no cause there's no cure um my you know is this would this be a valid um kind of reason to actually try and manage my my ongoing symptoms they said yes so I'm here training for England but also trying to deal with what is a pretty serious disease I you know making the making

the best out of life living really really hard that's what I like to say yeah fantastic um you've spoken really I wish I was in Costa Rica by the way at the moment not in Liverpool which it's raining and drizzling sorry it's great here not to rub it in yeah you are so you've spoken really openly about your um cerebal py and your journey as an athlete and you're you're an ambassador for inclusivity and accessibility in sport before we get into the details around your psse and your journey with psse can you tell me what

life was like before you started experiencing psse symptoms yes so I was born with SEL py and that's just a really common uh disability in children the most common disability in children so it meant I was in hospital most of my young and young adult life leading up to 18 years of age with lots of surgeries um but I had a pretty standard life I went to mainstream school I got into University um and I didn't find sport I didn't move my body I was all about um just staying still and using my brain really

um so I was kind of um I studied I wanted to be a doctor but I got into biomedical sciences and stuff and so yeah I was um I was pretty over the top back then even before sport but it was in university I found sport but I was president of Life Sciences I did a a million things and then I found Sport and I started to really direct my energy towards Sport and that was both two sports at once uh a sport called frame running uh which is an assisted running kind of sport and

then trike racing which was a paralympic sport so my life was I was yeah just really raring to go so excited to be out of hospital um my legs were in a better shape than they'd ever been so that was yeah between the ages of like 18 19 20 21 22 that kind of thing yeah so we know that um so you were really yeah really active at that point we know by um people experience psse symptoms and and the journey with psse very differently different people experience it differently how did you get diagnosed what

symptoms did you have that made you go to the doctor or maybe you were symptom free and you just got the diagnosis in a routine Checker well so I I went to the Paralympics in Rio 2016 and I would say I don't think I I had this one episode where I had really really bad um uh abdominal pain and sweating and it now it seems so obvious that was bod duct colitis but we didn't do anything I have a a policy of never going to an you know so we just I was young that was

fine that was the only only time and being a paralympian my Bloods were checked every year and it's funny now looking back I can see they said oh Hann you mustn't train on the days your Bloods are checked because you know you can change your blood test and it was the one the liver but all the liver results are really high and they just thought I trained and I wasn't fit enough which is interesting right but the reason I got diagnosed is um unfortunately my my symptom of saral py which is saral py might start

to get a lot worse which doesn't happen is a static disability and I felt very fatigued I was feeling every time I exercised I'd have to lie down for hours I mean I had a partner at the time and I said oh it's allergies I'm just super allergic to my cats and he said that's not allergies and I was like I I was totally in denial honestly it was It was kind of amazing to Fathom what I put up with um I was really struggling um and then yeah and then the pandemic hit and my

and my sports stopped and I said oh well at least I can get treatment for my spicity so I went to a clinic they did some blood to check I could go on medication and they sent me straight to the liver department they were like no we're not putting on new medication uh your liver results my GP didn't believe it though she tested me every single week for a month and they just stayed super high and she said oh wow okay and then they just took a bit of my liver really simple procedure a liver

biopsy and straight away it was it uh in the middle of the pandemic so not even with anybody in my in my bedroom the doctor was like oh yeah you have this thing as well as s py so it's pretty pretty big one yeah yeah and and so so so you got your yeah you got your diagnosis and you're obviously really active and really athletic and you've got this lifestyle in sport now how does how is how is PSC affected your day-to-day life so yeah so well as soon as I got the diagnosis we were

like oh okay this makes sense this is how much fatigue you were experiencing um and and also I was diagnosed at a point where they was they said it's pretty you've got pretty severe so well you never know right it's not a linear process PSC but they said you know you you have to bear in mind that you may have a transplant you know it's not it's not minimal what you've got it it's pretty severe sclerosis um and so that was actually really hard to deal with especially as my fatigue would come and go and

it was totally unknown with sour py is totally known it stays the same yes you you have trouble walking and doing daily activities but psse can hit you out the blue and I find it so much harder it's it's an invisible disability and I totally all the autoimmune girlies out there like just being able to use my brain it's my brain fog basically it started it was before then but basically because of the pandemic I couldn't do sport I had to then find a job and try to do a job and being so sleepy oh

I was it was it is still to this day the most the hardest thing to deal with and I have quite severe Sor py so like I use a wheelchair and no the ability to use my brain is the most valued thing and always was not my body uh so that's it's hard never underestimate like how much fatigue is a player in an autoimmune disease and I think it's amazing how we can treat itch but we can't treat fatigue or you know there are drugs that do and they did put me on one and I

do support it it saved that first six months it gave me back a little bit of my energy mapel but it's not a prescript prescribed drug generally so it's you know it's not for everyone um and it didn't it stopped working after six months so yes so it was it was pretty hard and it's I've had to come to terms with it I'm three years in now um and I guess now it's actually I have turned it around and it is quite positive I have said well I'm going to do everything I want to do

just in case I have to be you know go through a quite a serious operation which is liver transplant um and just it's a license to to do everything that I can possibly do in the time I have um even if that is 15 years only no I went to so many amazing places and had so many amazing experiences you're certainly the poster girl for that aren't you experiencing as much as you possibly can yeah well like my doctor told me something really powerful and he said you can't control you just can't control this but

what you can control is your Fitness and your you know any uh your Fitness and your health and your nutrition so that if you go through this operation you're going to come out the best you can and it's it's it's terrifying hear that as somebody who can't move easily I'm sure it's as terrifying as if you're an able-bodied person especially a woman maybe with kid you know woman or man who has a lot of child caring duties or work trying to live like an athlete is a really hard it's a full-time job so I understand

how how annoying that can be to hear but for me I mean I was like right okay that's what I'm going to do I think that he said if I could prescribe exercise I would and there's no cause and there's no cure to this disease so I mean that's how I'm going to live as long as I'm not ex you know not completely comos and that's what I'm avoiding essentially by by doing what I can and I found surfing and I'm sure there's other ways for people to to avoid the fatigue yeah ask you actually

about your coping mechanisms you know when we're diagnosed but I really think you've just talked about them the exercise the positivity doing what you can is there anything else that you found I know some people you know want to fund raise some people want to connect with others some people want to do lots of different things anything else you found was a good coping mechanism well first of all thank you to PSC UK because actually that was the biggest thing um I'm really lucky that my one of my parents is a doctor and it was

still it was very devastating for her to have this diagnosis for me because she had a disabled kid already you know the idea is that was soal py you get enough surgery by 18 you're out the hospital for life so now I'm looking at it the other way is that eventually I'll go back into Hospital hopefully only for a small amount of time but it was more devastating to her and I think pcuk and the the Specialists and being able to access you know without you guys we wouldn't be able to I I am in

a Specialist Clinic in Burmingham because I have got a complex case and so that is that has been a godsend because she does support me if I'm feeling terrible you know if I'm like is this it is this it you know you have a lot of oh no am I drawn this am I you know should I be on the list and I think it's Tak a lot of pressure off my mom and so I think support mechanisms I mean family friends but also PSC UK has been um shout out to Martin because she was

the one who said and I think just having a knowledgeable people even if you're you know I'm eloquent I can use my voice luckily um and and so can you know my mom is part of the medical community but it must be incredibly overwhelming if you don't have access to that so I think for me it has been focusing on sport as I said that's what I can control and make sure that I'm the best in the best health but essentially you guys are are a Lifeline I think and I think it's I don't dismiss

that I've had it's very hard to deal with mentally this disease um because I think the leading symptom is actually depression before fatigue so you know I'm very aware that I'm of that and and know before itching before uh liver failure it's actually the mental side effects of of not knowing so so I think I think you do an excellent job and I honestly I'm not kidding not just because you're interviewing me but it's really important to support Charities like yourself um so yeah thank you very much and I I have to say Martini is

absolutely brilliant on our help line so thank what do you think is the most misunderstood thing about PSC well coming at it as a disabled person already it's a a very visibly physically disa person you can't tell right now but if I was to walk across the screen you would and I'm sorry there's a little c a little background noise here but I think the Misunderstood thing is um the sleepiness the sleepiness in the brain F that you can essentially lose your cognitive ability um for for extended periods of time and that that's very hidden

so and you can you know and there's no cure and there's no understanding of that and especially you know that's that's the hardest thing to say even to friends and family I'm so sorry I can't actually understand what you're saying and I'm completely different to how I was right now of course I'm completely Lucid but tomorrow I might not be and it's um it's terrifying and very misunderstood and people just think whatever you know especially maybe the the laziness or or even I know people who've been diagnosed instead of with psse instead with fatty liver

and alcoholism and I'm just very lucky that I'm young and sporty that that never happened to me but I'm sure that that does has happened and how devastating that is I'm so lucky to actually have a very defined diagnosis for what's been going on that you know that i' I've been sleepy and that people have said oh that's because you're very you're experiencing very high levels of toxicity you know we don't know exactly why but you know not that you're lazy or you don't care or you can't tidy or whatever you know um like you

said ability of the disease that's difficult for some people to get their heads round isn't it yeah and even and especially um the actually how long and chronic this can be so that you have to say to people yes it could be a terrible diagnosis maybe but also that you can't start panicking now because you'll have to have endurance it might it might be two years it might be five it might be 15 so I you know I tell my loved ones like yeah okay we're not going to think about this negatively now we will

when we have to and you just have to brush it off you otherwise there's no life you won't live life you'll just be terrified so yeah you talked about you know you're in it just when you mentioned endurance there I was thinking you're in an endurance Sport Arena and you you you know youve got this perspective on endurance for PSC as well it's a really interesting um way of looking at it um I think I actually stopped being able to do my long road rides because I would be so tired and feel so sick and

I love sports so I kept doing it and kept feeling I called it an exercise hangover before even knew I had PFC I'd say oh I've got my exercise hangover now and people would say oh you're probably not fit enough oh it will go away and it's not and I think a lot of people if you're experiencing that and you're just you you know you just exercise and fun don't don't tell yourself it's nothing it's something you need to um exercise really gently I think yeah endurance I mean I'm I'm going to go full force

at anything but I do a sport now that's totally assisted so I don't do so much effort I mean it's still enough for me but it's not I get other people to help me and I don't think that's a bad thing I don't think be needing assistance asking for help saying if I do this you know you know if you look up chronic fatigue it's there's all the all the mechanisms of coding like The Spoon Theory of how many spoons you've got to spend in a day we use that a lot and um especially even

with my parents I'm so sorry I'm too tired to have you come visit and I love you still but they understand that it's not you know um but it takes time and Compass self-compassion um not necessarily endurance a lot of uh people I know push through things and you're taught as a paralympian to push through the pain and actually there's no pushing if you're liver is and bile ducts are causing huge inflammation if you push through and do a 4H hour road ride that's not going to help so yeah or you can't you know you

just have to just take the good days when they're there and don't let yourself be too bugged down by the bad days but but also say their bad days say like I'm having a bad day and I can be bad it's okay you know I currently that's how I'm living I don't know if it's the answer it seems to be the answer it seems to be the answer for you right and I think everybody's got a different way of coping and strategizing with the disease but that's seems to be a really good way of you

know it's working for you how do you find traveling with psse does that uh well with my brain fog it's actually really terrifying because I sometimes I don't know where I am or where I'm going to but luckily because of my physical disability I actually get like I I'm in an electric wheelchair so I don't expand any energy I get a lot of assistance around the airport um and of course it's interesting fatigue because I can do nothing at all for days on end and still have PSD fatigue and then I can do a a

competition or fly around the world and not have fatigue you know so it's not like a causal effect you have tiredness which is normal tiredness and then you have pstd fatigue which is something completely different and um so I think I think just in fact changing my environment and challenging myself is still something that does essentially distract maybe from symptoms but ESS certainly I don't think it would make it worse is just the fact that health insurance is a nightmare just watch out if you've got uh quite progressed PC you uh shout out of atie

for still covering me there are other insurers that that Do cover must say that I actually they don't give me a discount I shouldn't have said the name bleep them out so Hannah D thank you so much for your time today and opening sharing your experiences of your life with psse before let you get back to the beach and you're board um do you have any specific messages um or advice for others with PSC um especially young people with PSC um it's it's quite a scary thing to be diagnosed with um but I think you

know can you still party can you still do those things I say you must do those things I say you actually should I think it's a license to do more and to live harder because there is that chance that you could have to really uh have a liver transplant take medication for the rest of your life so if you aren't in that place right now then enjoy like escape from the hospital okay don't let them take you that's why I'm that's why advice me um and looking ahead what are your what are your goals and

aspirations what have you what's planned what's the future look like for so I did stop planning uh more than six months in advance with fatigue I I had to cancel so many things but since my clinical trial um where I did actually get rest fite from some of the symptoms um I've started planning for the future and I do I'm a writer and that depends entirely on if I can use my brain or not but yeah I'm focusing on the sport aspect trying to just qualify for the World Champs in this sport this surfing sport

I do which is not it's adapted surfing so it's perfect for me trying to just keep that going writing a lot uh about the par Olympic Games because it's par Olympic year I'm not I'm not competing but I hope to be doing some work for for them so that's exciting um and yeah and I I also yeah I hope to just keep on top of of you know my symptoms getting checked uh is really important to make sure I don't have any progression and yeah so that's what I hope for the future thank you so

much thank you so much for joining us today and for sharing your experiences and hope you have a the how long you in Costa Rica for a long time or oh yeah well as long as I I can I've got a little uh note from my doctor um we're doing a little trial here like to see if it actually helps me but he he I'm under strict instructions if I go yellow or get swelling I have to go come right back so fingers crossed um as long as I can to try and get some good

good um holistic healing out here and training so yeah hodin thank you so much for joining us today okay thank you so much bye