Anthony Heard - ITP and Fibromyalgia Advocate - S2 E14

Becky Miller:  Hey friends, welcome back to Autoimmune Adventures where we explore bold living, compassionate community, and the messy beautiful road of chronic illness.

Becky Miller:  Today we're talking with Anthony Heard, a UK-based writer, advocate, and rare disease warrior living with both ITP, which is immune thrombocytopenia, and fibromyalgia. Anthony is the author of My Purple Patch, a deeply moving reflection on life with chronic illness, identity, and personal growth. He's also a poet and a fierce voice in the rare disease community. We'll be discussing his health journey, his creative work, and what it means to live authentically while raising awareness.

Stacy Griffin:  Anthony, let's start with your ITP journey. Can you share your diagnosis story with us? How did you first realize that something was wrong and what led to your diagnosis?

Anthony Heard: Yeah, of course. I'd be pleased to start with that. I mean, I was officially diagnosed with ITP Immune Thrombocytopenia on the 28th of July, 2006. I mean, these dates kind of stick in your mind, don't they? I'm sure we've all got these dates, um, circulating around in, in our, uh, minds. Um, but I knew that there was something wrong probably for about two years before that. Uh, undoubtedly things were showing symptoms that I didn't know were anything serious at all. I was getting some strange, um, purple bruises, mainly on my arms and legs.

Um, unprovoked, you know, spontaneous bruising if you like. Um, sometimes I'd even wake up with one, you know, my wife would say, oh, crumbs, you've got a bruise on your elbow again. Or, you know, there seems to be one on your shoulder. Where is this coming from? And I kind of thought, well, you know, it's just. One of those things, you know, bruises are, they usually were healing up within a seven day period. Um, so kind of took my notice, but what, what was really, um, concerning was the fatigue, the sort of continual, um, tiredness and really feeling under the weather and, and just not really being able to focus very well, you know, sort of being distracted here and there and so on. And again, my wife said, "Well, look, you know, working hard," you know, I said, it's a stressful job, no question.

Um, and working long hours, like all of us do these days, you know, so we kind of, for a while put it down to, well, it's probably just time. It's overdoing it, and so on, so on. Um, like many people do, I guess, you know, but eventually, as. Said earlier in July 2006, I just thought I, I'll go and see the GP anyway, which is our general practitioner family doctor. Um, it's probably a virus or something, you know, I'm sure that all that will be needed is, um, I dunno what, you know, what they can prescribe for these things, but let's see what they say. So if I toddled to, uh, my local doctor. Worth saying that I'd never been ill before in my entire life. I mean, I was someone that would never be off. Um, always, um, healthy, good at sport, uh, loved sport, got passion for soccer, football, particularly cricket, which is not something Americans would go with, I don't think. Um, it's not like baseball don't go there. It's complex. Um, but, uh, nevertheless, you know, never been ill in my entire life.

So, u, rocked up at the doctors, you know, and the, the doctor said, "Well, you know, what's the problem?"

I explained it and she said, "Well, you know, um, I don't think there's anything serious." But at the end of it, I thought, I better tell her about the bruising. You know, this is something, it's a bit unusual, but I'm not worried about, I wasn't even thinking about it as concern, but I threw it in almost as if I was, as I was leaving almost.

Anthony Heard: And she said, "Oh, let's just have a quick look at them, you know?" And I kind of took my top and I saw her face drop through the floor. Literally, she kind of went from reasonably happy that she got rid of me pretty quickly, I'm sure. And she said, "Oh dear, you know, this could be...we need more investigation here. This could be serious."

You know, she wouldn't say what, and that kind of immediately raised my heckles because I thought, what you need to tell me, you know? And she said, "I can't say any more than it could be serious. Uh, I dunno what it is at the moment," but obviously later on I found out she thought it might be leukemia. That's what she actually thought it might be. She told me that about three months later.

Anyhow, she said, "Look, go nowhere. I'm gonna take some bloods now from you. Immediately I'll send you home." And this is even more worrying, she said, "Whatever you do, get home and sit still. Don't do anything. Don't lift anything. Don't get any kind of bumps on your body, particularly your head. Do nothing for the rest of the day until these results come back around 5:00 PM. Um, and I'll ring you then with what the outcome of the results are."

So, around about 6:00 PM, I got the call from her saying that "your platelet count is four."

Um, and my first question was, "What are platelets and what's, well, at least four, good, bad, or indifferent, you know?"

And she said, "Well, you, you a normal person, um, bad language, but a normal person would be 150 to 400. That's how we express a reasonably normal count. So four is negligible. It means basically if you cut yourself, you'll probably bleed out. You know, you could do, or if you have a bang on the head, you might, um, die basically." Um, uh, and she then said, "Well, look, go to your nearest," what we call in the UK Accident and Emergency Unit, which is casualty. Um, I think in the UK, the US it's ER, isn't it? Emergency Room. "So, um, go to your nearest hospital.Um. They'll, you know, run some tests, but whatever you do, take an overnight bag because you're gonna be in, you know, you won't be coming back tonight. Um, you'll need a lot of investigation and probably monitoring, you know, in case something is possibly gonna go wrong internally," that I didn't know it at the time, but her main concern was a bleed into a major organ, lungs, liver, you know, or worse brain.

Nevertheless, I get to the A&E, my wife said, "What, what, what did the doctor say? There can't be anything wrong. It's only, you know, nothing serious, surely." And I, I kind of babbling away trying to explain what the doctor had said. And she said, well, look, go to the car. Sit there, I'll get everything else that you are gonna need. She threw everything into a, a bag, you know? And, and she drove me to the hospital, thank goodness. And there we were for the rest of the Friday night. And, um, it, it's not a good place to be on a Friday night. I can tell you.

Um. They were so reassuring, you know? And the first thing they said was, "Well, the blood tests you had earlier in the day, it can't be four. You know, your platelet count cannot be four. It's impossible." Um, so I think they were trying to reassure me, I dunno, I mean, or maybe they were amazed themselves. "Um, it can't be four. We'll run some more blood tests now and a number of other tests as well. We'll be doing along the way. We'll check you every half an hour. Um, blood pressure, temperature, heart rate, and so on, so forth."

Um, and I was well looked after, there's no question about that. Um, but nevertheless, they couldn't believe that I'd only got this platelet count before. Looking back on it, it's because I, they don't see people with ITP. They just don't, I mean, more they do now, of course, in 19 years, hence. But in 2006, it was extraordinarily rare. I mean, hospital the size of our one, which is the raw Berkshire Hospital in Redding. It's u, would've only probably seen one case of ITP a year, if that, you know. Um, now it's probably something like 10 cases a year.

Uh, strangely as I speak to you, I've had an email from the Royal Berkshire Hospital. Nothing serious, don't worry. Um, I was expecting it. So there we are, uh, midnight on that fraught Friday evening, as I call it. The doctor came back and said, "Well, yeah, your platelet count really is four, seriously, you can count 'em on one hand." You know, uh, uh, and, and he was quite shocked by it. But he said, "Look, all the other tests we run, confirm there's nothing else wrong."

Anthony Heard: Which was very comforting. You know, in the, the, what they check is your red and white blood cell count as well, and they are absolutely spot on. All the other indicators were spot on as well. Nothing wrong with diabetes, you know, blood sugar level, all these things spot on. Only problem was platelets.

So that, as he said, is "a process of elimination. Your we, we, um, diagnose through elimination. We eliminate everything else. And we have, the only thing you can have is ITP, which, which means effectively your body's immune system is mistakenly attacking and destroying your platelets. Your bone marrow is producing more than sufficient. That's worki well, uh, and, and producing loads of them, but you are destroying them so quickly that, um, you have not got enough circulating in your system. Your immune system's gone into basically overdrive. It's gone crazy. And it is, is identifying these, these good guys as bad guys. It thinks there's some, there is something to be attacked as if it's a, you know, a, an enemy."

Um," but he said, "Don't worry what you do. Not a problem. We've got treatments for this."

And I thought, oh, that's quite, you know, being the naive idiot that I was, having never been in an hospital in my life before, apart from to visit relatives of course, that were perhaps, you know ill, um, I thought, oh, that's, that's great. You know, when do I get to go home then? You know, let, let, let's, let's do this, you know?

Uh, and he said, "Well, we're gonna give you something called Prednisolone. You know, it's, um, pretty common drug really. Not an issue. If you take this for a week, your numbers, I'm absolutely certain, will be back to normal." And of course, at midnight on a Friday with all the hassles going on around you, all these lunatics run, running around, um, that have probably had far too many, um drinks, um, and they were just doctors, blah, blah. No, um, uh, you know, you can't of think, "Well, just let me out of here. You know, I just want to go home, you know, please. And my wife are saying, look, we'll be fine." You know, and we, we almost had to persuade them to let us go home, because he said that anything under sort of 50 platelet count at that time, they would've usually kept us in, you know?

Um, now things are much more liberal and we know more about it. And, uh, I think unless you are in single figures and, and, and, and maybe if you've got other symptoms, they will keep you in. Luckily, I never had any other symptoms and, and still never have had, you know, so bleeding usual symptoms, uh, that people might get with a low count are bleeding from the nose, you know, spontaneous nose bleeds, uh, perhaps blood spots in the eye. Uh, e, gum bleeds are a big one. You know, if you've got and gum blisters, blood blisters in the mouth, obviously, uh, bleeding in the bathroom is also quite common with folk. Uh, but I never have had any of that. It's just the bruising and tiredness. So weighing that up, they let me go home with this bag of, of um, what I call the Devil's Tic-Tacs.

I dunno if you had Tic-Tac in the States, but, uh, the Devil's Tic-Tacs, prednisolone, and the other drug, they gave two other drugs actually. One was alendronic acid, which, um, allegedly, um, mitigates some of the impact of prednisolone in terms of your bones. And, um, concerns that they might side effect you in, in that department. The other drug was omeprazole, where again, prednisolone is known to cause stomach acid issues. And um, so I was packed off with those three drugs and told that if you could come back on Monday, we'll have a a, an actual ITP person who knows what they're talking about to actually explain it to you. The irony is that they.

Didn't have at, at that time, they didn't have an ITP expert on duty over the weekends. They kind of at five, at 5:00 PM on a Friday. That was it until Monday, nine, 9:00 AM uh, now it's obviously all changed in 19 years subsequent, you know, but at that time, they had to actually ring this guy to say, look, "We've got this guy turned up with a platelet count of four, what should we do now?" And they were having this conversation on the phone, you know, and it's hard to believe that that is only 19 years ago, but that's how it was. So I dread to think where this guy was. I mean, he, maybe, I don't know, perhaps he was in the middle of a, a family party or having a meal with his wife or something.

But nevertheless, he set me right. So I then met him on the subsequent Monday. Luckily, my platelet count had already increased from four to uh, uh, somewhere in the early seventies, 72, something like that, within three days. Uh, the Friday night, Saturday, Sunday, and Monday morning I met him at 2:00 PM the next, on the Monday.

And, and there we are. The journey, the journey began and it, um, it only got better from there, if only I could say that. But um, yeah, that was the start of the rollercoaster. So there we go. That was the start.

Alysia Thomas: So after you got that diagnosis, what were, what were your biggest challenges, physical and emotional challenges that you faced during those early years, especially with such a rare disease?

Anthony Heard: Yes. Um, physically, funnily enough, I, not much really, apart from the prednisolone sudden, I mean, it, it folks that maybe have had prednisolone, the initial impact of them was, I thought it was, if I could do anything, literally, I mean, within three or four days I was kinda running around mowing the lawns, you know, uh, does the fence need painting? You know, hang on, let me do, what else can I do? You know, there wasn't enough in the world for me to do. Um, but because that was the initial, you know, boost that they gave me, um. But then of course I found out how they actually work and what they do because none of this was explained when I was just given them.

I mean, they gave me this bag of drugs and said, "There we are. Thank you. Goodbye. Have a good evening." Um, you know, but of course once you actually start researching, which wasn't possible on the internet at that time, although it was available, it was such limited, um, knowledge really on it that you really did need to talk to a specialist about it all.

And, and, um, on that next Monday is when I really got to know what the drugs were doing and what they were supposed to do, um, but physically not an issue. But man, what I say, not an issue, but nothing drastic, although it will come soon. I'll let you know about that soon. Um, so the first week of the, of the drugs fine, platelets gone up. Marvelous. My mind is thinking, Well, another week of this, and that's it, you know that. That'll be it. Then. Thank. Okay, I'll just go put the tablets away. Uh, we'll say goodbye and thank you. I'll get on with life. You carry on with the NHS. We'll be happy.

Anthony Heard: Not at all. That was, this was only gonna be the start, you know, not, not even the start. We hadn't even got to the start line yet. Um, so after a week, things were looking good, but mentally you start then asking questions. You're thinking, yeah, maybe I'm not infallible. You know, may, maybe I'm not young anymore, you know? Ooh, you know, maybe I have been running around a lot. You know, maybe my job is a bit busy. You know, I hadn't realized that, you know? Ooh, yeah. Really. Maybe I am destructible after all, you know. Oh dear. You know, whoops. And you start questioning lots of things, you know, not least what the drugs are gonna do as well, because that starts to play on one's mind. Um, whether that term, it ever gets answered.

I dunno, because we all react differently to the drugs. That's the other factor I soon learned. But talking to other people, when I went to the hospital on that Monday, they were saying to me, oh well you know you don't want to stay on steroids. Prednisolone's terrible. You be on that. At the time I was thinking, well, I'll be on it for a couple of weeks and off little did I know that would never happen.

Not a child. Um, so, but the emotional side, I think, and that is something I'd like. To get across very much. I think more support is needed for that. You know, doc doctors are there to just solve the problem. You know, they, they see you as you are a problem. You know, a case if you like, case solve, move you on, you know, they don't. Then look beyond that and what it's gonna do. The holistic thing, you know, this holistic approach, what's it gonna mean to your life? What sort of impact is it gonna have on your family, on your nearest and dearest, your friends, your relationships with, with things that are going on in life? What's it gonna mean for your job and all the other things that you do in life?

What exactly are is that gonna do to you? You know? And their job is to get patch you up, get you out, move you on, you know? And I appreciate that. And in the UK that is free, free of charge. We paid for it in taxes of course. But, um, I appreciate what they're trying to do, but it's gotta be a more holistic approach. We're getting better at it, but it's gotta be much better than it is mental health. It's a Cinderella thing in the UK. We kind of pay lip service to it, talk about it a lot more, but don't really do anything in my view. We talk about it a lot and it's, oh yeah, we need to take account of it. We need to do something about it.

Um, let's talk to celebrities that might have had issues with it. But the reality is what do we actually do to really help people? And I'm not sure there is that much, um, that is effective. But anyway, that's another issue. But yet the point that you made, certainly the, the impact I found was quite an, an emotional side. You know, so sort of realizing that there may be things I can't do anymore here, you know, that I may not be able to, for example, I may not be able to sleep with with prednisolone. The chances of getting anything like a normal sleep are nil really. And, but nevertheless, I'll come onto that in a minute as well.

But it worked to my advantage, believe it or not, because I'm a great believer in problems present opportunities. You know, problems are one side of the coin. There's always two sides to the coin. What opportunities is that gonna now give me, you know, to do something slightly different, maybe new, but, um, how can I look at it and turn it to my advantage, or at least work with it in the best way I can.

Anthony Heard: So, I'll explain that in a minute, I think. But yeah, most of it I think was emotional to start with. Um, but then we'll come onto the physical side as well. I'm afraid that will come as we get on.

Becky Miller: Well, really quickly, um, I think you've mentioned, and you can definitely clarify this for us, 'cause I know like you said, it's an ongoing treatment, but would you say, I know you have your, we'll jump into your fibromyalgia here in a minute.

Your ITP, would you say it's in remission of a sort with the way they've got it controlled now?

Anthony Heard:  It's controlled. I think I, I, I think they, the specialist would call it controlled, not remission. I think they define remission as no treatment whatsoever. You just go back to a normal manageable plate, platelet count without any intervention at all. Mine is controlled because I, I'm on permanently on a drug called mycophenolate mofetil, which like prednisolone suppresses the immune system, so it kind of dampens the immune response.

Um, uh, the two ways of treating ITP, and I'm sure too, they're sort of a common thread with many autoimmune illnesses. You either suppress the immune system to calm it down so it doesn't destroy platelets as quickly as it otherwise would, or you boost platelet production by giving it a, giving your system a stimulant, and they're called TPO drugs from, uh, so you, you, I, you stimulate your body to produce so many platelets that it overwhelms the amount that you're destroying. So the net platelet count is higher because you're, you're just swamping your body with it. And they are very recent drugs. They're only a 10 year, they've only been around for the last 10 years. So it, it, it, the old treatments were steroids dampen the immune system or remove your spleen. Uh, and that's pretty, pretty radical in the sense that most platelet destruction happens in the spleen.

Most - 60% there or thereabouts - happens in the spleen. Although we now think a lot of platelet destruction could be in the lungs. Believe it or not, there are platelet pockets of platelets gather around your mega organs because they see it as a protection. You know, they, they're protecting the key things in your body. Lungs are one of them. Um, uh, liver is the other one where a lot of platelet destruction goes on with liver, and that's why people with alcohol problems will, um, have lots of bruising and bleeding because, um, they're getting platelet destruction or not, not always platelet destruction, but the liver controls how much platelets are produced, if you like, so if you are damaging your liver, you're damaging platelet production. Um, it is so intertwined all of this, isn't it? So, um, but yeah, so everything I've had has been immune suppressing drugs. All, all the treatments I've had, and they've all worked, they've all set my platelets back on track.

Anthony Heard:  So if you respond to one immune-suppressing drug, you will in most cases respond to all of the immune-suppressing drugs. So they literally try them all. Um, uh, only now we try less with steroids. Steroids are, as we said before, an awful drug, really. Uh, I can't, uh, I can't, um, say enough negatives about them. They're awful. I mean, they create so many other things that will come on into a minute. But, um, uh, so we try to avoid steroids now with ITP, uh, treatment. We give them, first up, that's the first drug that people will get. Um, if they respond to them, um, you gradually get weaned off them. And then if your platelets drop again, once you're off them, we won't give you them again.

You'll go onto something else because it's not worth, and that's what happened to me. I, I, I was given them platelets went up perfect, back to normal, weaned off them, slowly within three months of coming off the platelets drop again. So what was happening with me is they keep giving me the steroids back in 2006, that was the weapon. You know, there wasn't anything else unless you had the spleen out. But as we've already said, spleen only destroyed 60% of your platelet. The rest are destroyed elsewhere. So there's no guarantee if you remove the spleen, you're gonna kill the the, um. ITP off at all. Um, although there is a test that they can run to double check that.

Um, but that's very, it's, it's not even very well available in the UK. I think the UK is still the only place that actually does that test. It's called an indium label test where they run a dye through your body, um, to trace where the platelets are getting killed off. Um, and that will tell whether they're getting killed off, down in the spleen or elsewhere. Um, but that's quite rare in the UK. We don't use that very often now either. So, um, and, and taking someone's spleen now is very much last resort, hardly ever done now, hardly ever. Um, there's the, the drugs that I said earlier that stimulate platelet production are now much more, um, reliable and, and they seem to work very well.

So, um. You know, long, long may that continue, but we shall see. The sad thing with that is though they've only been going a short time, so we don't have a lot of data about side effects. You know, we we're still not really sure. I mean, we will probably know in 10 more years, I guess. Um, although they seem to be quite well tolerated up to now anyway. Better than pre, prednisolone for sure. That's awful. But, um, there we are. That's a, a brief, a brief introduction.

Stacy Griffin: I would agree that prednisone is evil. Yeah. It's all, all steroids have Yeah. Side effects that are not pleasant.

Anthony Heard: They're difficult. Yeah. Very difficult. Um, people don't understand how they impact your adrenal glands, you know, and that's a major problem because if you get, don't get weaned off them slowly, you, you know, your adrenal production starts to be badly impacted, you know, because when you're on the steroid, of course that takes over the, the, uh, the adrenal production. Um, now if you come straight off of them, your body's thinking, well, hey, you know, what can, I can't produce enough of this quickly enough as I was when I had the steroid help, you know, that, that was giving me all of that energy to do that or giving me the, the base to work from.

Um, so you've gotta be very careful to just wean it down very, very slowly. And I've had a lot of patients say that that didn't happen with them. You know, they were just withdrawn pretty quickly, you know, and during COVID time that, that's another issue as well. But because we weren't able to see, uh, specialists and doctors face to face, I think a lot of people were, you know, not perhaps getting the detailed, um, care. Is that right, the right word or detailed? Um, thinking that they may have otherwise got, I dunno. Um, but, you know, times are different is context.

Stacy Griffin: I know you, yeah. It's hard to diagnose you when you're not face-to-face.

Anthony Heard: Mm-hmm.

Stacy Griffin: Okay. So...

Anthony Heard: Yeah. Yeah.

Stacy Griffin: In, in addition to ITP, you've also been diagnosed with fibromyalgia.

Anthony Heard: Yeah. Yeah.

Stacy Griffin: When, when did that enter the picture and how did it change things for you?

Anthony Heard: Yeah, right. Uh, well, fibromyalgia was di, officially diagnosed in 2023. I think it was September, October, 2023. But I kind of knew I had it. I mean, I, I, not necessarily I had that, but I had something going on, you know, uh, back in 2020, something like that. I kind of thought all is not well here. And, you know, fibromyalgia is another one of these Cinderella illnesses that. Doctors here kind of just laugh at it almost. And I don't mean that in a bad way, but they kind of think, you can't have that, it's, you can't possibly have that. You look absolutely fine.

You know, you've got a really responsible job and. You do all this work for the community, you know, you are the kind of guy that, you know, we suggest you do everything right. I mean, diet was good. You know, I don't smoke. I very rarely drink alcohol, you know, a glass of wine with a meal now and again, but, you know, my GP would say to me, "Well, there's not really a lot I can advise you to do from your, you know, um, from your well-being side. There are things you might want to try that you've never tried. But, you know, there can't be anything wrong with you."

I mean, literally, he was saying this to me that "There's nothing wrong with you. Your blood test results are absolutely perfect. Platelet count, bang on where it should be, you know, red cells, blo... white cells, uh, folate levels, vitamin D levels, all the major minerals and vitamins, spot on. Um, nothing wrong with you."

Anthony Heard: And of course that is a telltale sign a fibromyalgia - that there isn't anything wrong with you that there is no test for fibromyalgia. They can't run any tests. Again, it's a bit ITP-ish in that they have to sort of eliminate other things. So, and again, these kept coming back good, you know, thyroid, no issue, uh, diabetes, no blood sugars, bang where they should be. Absolutely spot on.

And, and all you get is, "If, oh, you just relax a bit, you know, it's probably stress."

Alysia Thomas: "You should yoga."

Anthomy Heard: ....and know that because I'm thinking, which is I can understand that as well. I can understand them thinking that. 'cause another fact with I, uh, fibro is it is something that, that one symptom is, you know, showing anxiety, stress. Um, so I can understand them maybe thinking that. Um, but you know, they, and I can understand what they were trying to tell me. "You know, just go away. Relax, take some time off, you know, go on holiday, do these, do do, do something nice, whatever." Perfectly understandable. But it's no long-term treatment for fibro.

You know, you need a, you as we'll, we'll discuss. You need a, a kind of, um, a whole arsenal of things to, uh, to attack fibro. And that arsenal will be different for everybody that has fibromyalgia, you know, so as we'll come on to, you know, there are bits that others have tried that I kind of think, oh my gosh, you know, that would, that would floor me, and there are things vice versa that I might have done, you know, that others would just think, Hey, no, I can't do that.

Um, so yeah, 2023 it was finally diagnosed and I know why it was diagnosed because my mother died in 2020 and I'm absolutely convinced that, that reawakened those, um, you know, sort of, um, pre-issues that I'd had when my dad was killed when I was seven. So I, I have no question about the bereavement, you know, and even looking back at my ITP, my uncle died a year before I was diagnosed with ITP.

So I'm absolutely convinced that both of those incidents in 2020, 2021 and 20, 2004 when my uncle died, were really connected to that 1967, you know, when my dad dies. Absolutely, no question about that, because the body keeps the score, you know, the, the brain keeps the score. It cannot keep it in. It can't, it has to express it somehow.

And I liken it as, um, you know, a bottle of cola, tie the lid on really tight and shake the damn thing up, gently undo it, and it'll fly out and hit the ceiling. That's what ITP oh, that's what fibro effectively were. Effectively they were the coke on the ceiling. You know,

Alysia Thomas: That's a great analogy.

Anthony Heard: Maybe there's a better analogy, but that's what it is.

Alysia Thomas: I think. No, that, that's a good analogy.

My specialists would say, well, twisting fingers, not sure. You know, and that's how specialists are. 'cause that's what they are. You know, they're science guys. They're not on the whole, they're, they may be exceptions, but they're, they're not emotional people at all. They are literally black and white. "Here's the stats. That's what it tells me. So it can't be that," but you know, when you are kind of half and half like me with fibro and probably lots of other people that have read into this, you are convinced by the stats, but you also have this emotional side that says, hang on. Stats don't tell me everything.

You know, that, that my blood pressure numbers are great, but they don't tell me the whole score, you know, that I need, I need an ECG to check my heart as well. You know, you need the both things to tell. So I'm kind of, you know, in two camps, I suppose I'm in the sort of, I like the stats, but I like the sort of holistic approach of tell me what's happened in your life, you know, and no one ever, ever said that to me.

Alysia Thomas: No.

Anthony Heard: And they'd have res, they'd have got the diagnosis in 10 minutes if they have, yeah.

Alysia Thomas: I think you're, I think you're absolutely correct about that. And when you have two conditions, um. My sisters and I talk about this often, um, sometimes they overlap and you don't know for sure what's going on with one and what's going on with another.

So when, when, now that you had two, when, when that entered the picture, how did it change things for you? Like how, um, did your approach to self-care change? And it sounds like you figured out pretty quickly that you needed to be a better advocate for yourself.

Anthony Heard: Yeah, I mean, I think that came with the ITP originally anyway, 'cause I kind of realized, look, there aren't many people that have got this thing, you know, um, let's get in touch with, I had no idea there was an ITP support association at all. I didn't know anything about it. My specialist said, he actually said to me, "I think there is one. Why don't you look them up?"

Well, you know, that was not as easy now then as it is now. But nevertheless, I got in touch with them and that's how I got involved in advocacy work to start with, you know? And that only came in 2010, and that only came because I had a drug called Rituximab, which put me in remission for about three years, two and a half to three years. And I kind of thought, I'm feeling pretty con, you know, pretty good. You know, I, I need to give back a bit here. I actually thought naively that I'd be in remission forever. Then I kind of thought, this is it. I'm normal again. Hooray, I can now go do anything I want, whenever I want, you know, and that's when I got into the ITP support Association in 2010.

Anthony Heard: And from then I've been doing bits for them all the time. But, um, as you say, how you adjust. Ironically, I think like many other patients I've spoken to, getting a diagnosis is a kind of relief. I mean, you kind of think, yeah, I was right, you know, I knew there was something not quite right. Um, yippee, you know, we now know I've got fibromyalgia.

How lucky me, you know what now? So what does that mean, you know? And of course the ordinary family doctor can't really explain it that well because they just don't know. I mean that, that much about it. And, and I guess why should they, you know, um, I, I, my former life used to be a bank manager and I likened that role as a, pretty much like a general practitioner doctor in that people would come to see me with all kinds of undiagnosed financial situations, and it would be down to me to point them in the right direction, whatever that direction might be.

So that is kind of like what the GP is doing. He's kind of the, the, the filter if you like. He's almost like a triage locally if you like, really. So all he's doing is saying, "Well, I don't really know anything about it. You can go and see her or him and they'll tell you all about it." So the GP wasn't really of much use apart from being able to sort of push you in the right directions. And that was comforting. I mean, so getting the diagnosis was great. Then seeing the g, family doctor, GP to then send me to the right people was wonderful. Downside is that you can't see that person tomorrow. It's gonna be, um, not sure really. It could be next week or when the next blue moon turns up, you know, or when the pig flies by your living room.

Um, so that was the big problem that you can't see anyone that can really. Tell you about it properly and suggest ways forward. Um, and it took about 18 months to get that, you know, and, um, by that time you've already worked out what you can do anyway, thanks to the internet. And people like ourselves, like you folks that are trying to educate people, um, some of the right ways they might consider going.

Like, all of this is a lived experience. These are the things that work for us. They may not work for other people. I always throw that in because, you know, we are all different and our autoimmune systems do odd things, um, to each others individually. And that that's why it's so complex in an area of medicine and science. You know, that. But what works for me may work for somebody and I hope it does. If it doesn't, well at least we've told them what has, what has helped me.

Becky Miller: Yeah. I was gonna say, we're, and we've said it before, we're not doctors and so we don't wanna like ever put it out as medical advice per se, but it is shared experiences. 'cause I know for me, I, there have actually been diagnoses I've got, um, because my lupus diagnosis was because my sister Stacy heard what was going on with me.

Anthony Heard: Yes.

Becky Miller: And said, some of these are not typical, but I had some of them when I was diagnosed, you need to go see a rheumatologist. And so sometimes having that shared experience with people, uh, that's important. And I think especially, I think it's important for any of the, you know, invisible illnesses. Especially for rare ones like ITP.

Um, but let's, let's kind of shift just a little bit. Yeah. I mean, it still goes along with it, but we want to ask you about your book. What inspired you to write My Purple Patch?

Anthony Heard: Uh, I guess the first thing is why not? That was the first thing I asked myself. And again, this kind of started around, I had a drug called rituximab in 20, 0, 2010, sorry. Um, that was the first time I had rituximab and I, I, I really got, um, good reward from that. You know, it has its side effects and, and po, potential issues. Um, but nevertheless, I've got good response to that and I kind of then felt that, you know, I can be really active again.

Now, this, this is kind of, um, I thought I was in remission forever, which didn't turn out to be the case. 2013. I then, um, sadly my platelets dropped out of nowhere and I had rituximab again, and, uh, and again got three years remission outta that. And nevertheless. I was quite happy. I thought, well, you know, if it gives me three years remission, it might be longer.

I mean, there are no guarantees in this thing, you know? Um, that's another issue that, you know, psychologically one has to get to terms with, you know, that you, you're never really sure whether it it's gonna come back or not. And if it does, when it does, how it will, where will you be when it does, um, you know, what will you be doing that might jeopardize other things?

But anyway, so 2013, I had rituximab again, and I really thought, yeah. I said to my specialist, "I've had so many things going on since 2006, I could write a book about all this." And he said, "Well, go on then. Why not? No one else has done one in the UK. Not as far as I know." There's a, a wonderful lady in the. Uh, I think she's in South Carolina now, called Greta Burrows.

You mean I've come across Greta's name on various social media stuff, but she had written her story, it's called Heartaches and Miracles. And I, um, got in touch with her and said, "You know, how, how did you, what, what was the background to your case? You know, can you send me a copy of the book?," you know, and so on.

Anthony Heard: And that inspired me. I thought, well, you know, there's the only book I know of about what's happened to me. As my specialist said, why not? You know, just do it. You know, you, what's the worst that can happen? Nothing really. You just go for it, you know? And it, I found it very helpful. I, I really did. It was the first time I'd really sort of unloaded, um, most of what had happened to me.

And it, another aspect of it was, it was a good way of remembering it as well. 'cause while it's, you'll know when, when you are caught up in this maelstrom of, I call it lunacy, really, because you really don't know. You're getting from push to this, to that from one to the other, test for this, a result for that and this and that, and all sorts of people getting involved.

You're not really quite sure what is going on half the time. I mean, I kept good diary notes because that's something I'd always recommend to patients. You know, keep a record, you know, keep a full record and if you can't do it, get someone to come with you to keep a record, you know, even if you have to.

And then lots of patients are in that POS position where maybe they're physically impaired and can't write things down. Ask your specialist, can I record this conversation? You know, you need to be able to have time to breathe and take it all in at your leisure. Sometimes you can't take it in during, always during an interview.

Anthony Heard: It's very stressful for people. I can understand that. So I always recommend that, you know, take someone with you, write some questions before you go, you know, do some research before you turn up at the appointment. So yeah, the, the back to the question is, um, why not write the book? Why not? It's something you may as well try no one else has.

Um, and it was very therapeutic to get it all off my chest and get, try and remember some of this stuff that I'd gone through. Um, and also by then I was, um, working as a volunteer for the ITP Support Association and I'd set up all their social media platforms and was kind of posting pretty much, uh, most of the main content on those, uh, platforms.

Um, and yeah, I mean there was the, uh, chief executive there, Shirley Watson, who set the thing up, and she set it up in 1995. She gave me huge support to do it. She said, "You know, go and do it. Yeah, absolutely. And, you know, we'll be behind you," quote, " you know, our sources as well. You can involve some of the specialists that we have got on our medical panel, uh, if you need to, and, and they'll vet it for you medically," which they did was great. And to know that I hadn't included anything that might end up causing more problems than good, you know, so, um, it was a good project to be involved in.

And, um, how I write, I have no idea. Absolutely no idea. I just do. That's it. Now where that's come from? I have no idea, although I have an inkling that when I was a kid I was around about eight or nine. Strangely enough, it's an American connection again. And um, this is true honestly, my headmaster and a headmaster in the US swapped for a year. There was a kind of scheme going on. I don't know where this scheme was. The guy's name was Mr. Rafel, and I'll never forget him. He had a buzz cut here, you know, um, and he took me aside one that, and he said, "You can write, you know, I dunno what it is you can write."

And I'll never forget that. And I thought, wherever Mr. Rafel is now, hats off to Mr. Rafel. You know, I wish I could meet him again. I can't, I mean, he must be 153 or something by now. But, um, that guy kind of inspired me as an 8-year-old kid I thought. Yeah, maybe, you know, one day maybe, I dunno. And even when I was working, I, you know, I was thinking back to 2000 and the UK got the Olympics in 2012 and the day we got it awarded it, I think it was 20, uh, it was, it was 2005, it was the 7th of July, 2005, and it was the day that we had a terrorist attack in London.

Anyway, I wrote a poem that day on us getting awarded the Olympics, and I kind of thought nothing of it at the time. I thought, oh, it's a bit of fun. And I kind of thought, yeah, I can do, I can write, you know, a bit, you know, it's fun, you know, I, I like writing for myself, not for anyone else really. Um, because it keeps the gray matter going and I think if you can do anything that does that, that's gotta be worthwhile.

So, but nevertheless, I sent that Olympics poem off to the, um, one of the, our, our daily newspapers and it got put, put in the daily newspaper. So I got a little bit of a kickback from that, you know, and I kind of thought, yeah, I can, I can do this if I put a bit of time into it. And so that kind of sowed the seed for me to keep going on it. And, um, I just enjoy it and if it, if it makes other people amused, happy, helpful, whatever, well so be it. But it's, it's given me a bit of thumb, you know, nothing else. My wife will probably tell you otherwise, but nevermind. Uh, but there we go.

Alysia Thomas: Um, writing is very therapeutic. The three of us are all lovers of the English language and we are all writers and we have all found that same therapeutic quality in writing that you have.

Anthony Heard: I think that is much the case of it. I I, and I think it's, I was hinting earlier, I think these are characteristics that underpin, I mean, again, the specialist would say, well, that's nonsense. You know, it's anecdotal, rubbish. But these are kind of characteristics that underpin autoimmune conditions and chronic illness.

People that actually care about things. People that wanna give something back. People that actually have got, how dare I say this, integrity and honesty and live a good life. And that actually want to serve, you know, that in my view, there are two types of people. There are those that give and those that take, you know, I'm not a taker.

I'm someone that wants to, you know, hopefully create something decent for people, you know, and if we can share it amongst ourselves, great. You know, and learn from each other. That is probably a naive worldview in the current climate. But I think if enough of us are like that, you know. What can be wrong with that, you know, I think, but you know, hey, that's another subject for another time.

But, so it was a good way of getting it all off my chest and, and remembering what had happened. Some of it I had not remembered that all - one incident I do remember, that changed my life completely and it was not getting diagnosed. I'd been on steroids for about a fortnight and I literally fell from the top of the stairs in our house to the bottom and collapsed in a massive heap at the bottom of the stairs.

And I thought, yeah, this isn't right. You know, you definitely are not right. It, it finally hit home to me that what a diagnosis was, you know, that this is gonna be how you move forward. And actually it did me a massive favor because I've got a blank sheet of paper and I got myself a coffee and sat down and wrote out all the things I was doing that I shouldn't be doing.

I thought that's gotta go, that's gotta go, that's gonna go. What are the things that really matter? And it may be the first time because of work commitments that you had a real opportunity to review just what really does matter. You know, because we are all caught up in the, in the moment, in the work environment and the pressures and stresses of that. And it, it gave me an opportunity to sit down with that blank sheet of paper and, and really work on what do you really value, what's important to you and those around you, you know? And, and it gave me a great opportunity to do that and I'm grateful for that because, um, strangely enough, the sleepless nights turned into an advantage because I then did a degree up here we have something called the Open University, which is, um, university courses online.

Anthony Heard:  You don't necessarily have to go, you can attend sessions, um, face-to-face, but most of it is online. And I did a degree online, because I couldn't sleep. You see, I found that these wretched steroids were keeping me awake. So I thought, well, I'm gonna be awake anyway. I might as well, you know, I can't disturb my wife all the time. I'll go downstairs and, you know, mug up on David Hume or Rousseau or something interesting. You know, that might. Might add to the degree, which it did. So I got the degree sort done, um, which I may not have done otherwise. I kind of, I thought well here's something good that's come out of it. You know, I'd always thought I missed out on doing my degree.

I got a financial services degree back in '90 or something. Um, whenever in, back in Elizabethan times when the queen was still around.

Stacy Griffin: Elizabethan times. Yeah,

Anthony Heard: Elizabethan II times. Um, but yeah, it was so, you know, I'd done a, a degree equivalent qualification, but I'd never got a university degree. Um, so it's always something I'd wanted to do and I thought, well why not? You can't sleep anyway, so to hell with it, you know, just do it. And I did. Maybe it was fool hard to do that. I dunno, my specialist didn't grumble about it, so I kind of thought, well, it must be okay. And he sort of said, "Yeah, go get on with it,"

Stacy Griffin: You know, but well...

Anthony Heard: ...yeah, so it was mixed bag of things.

Stacy Griffin: Yeah. Yeah, I can imagine that.

I think our disease often gives us a chance to go down avenues we might not have otherwise gone down. And one of the things that I've noticed from reading different things that you've sent and looking things up was that you have done a lot of volunteer work for ITP.

Anthony Heard: Yeah. Yeah.

Stacy Griffin:  Um, in your opinion, where are we still falling short when it comes to supporting people with rare diseases like ITP, and invisible illnesses like fibromyalgia, and a lot of the other diseases we talk about.

Anthony Heard: Well, I think we sort of touched on it. Already in, in, in a, in a limited way. But I think the mental health side of it is just not understood fully. Uh, I don't we we're scratching the surface with it at all. Um, uh, we're trying hard.

I mean, there are a lot of, what I would say is there are a lot of very, very, he, um, well-minded people they're trying to help. But again, I get back to this holistic approach that, you know, I think that has to be in your community. It has to be in your family doctor. That facility has to be there at a local level instead of hid off to a specialist somewhere that you kind of disappear down a, a dark corridor really with.

But, so I think mental health is something that, that people need help with big time. And it's with the ITP Support Association, that is the feedback we got. I mean, our annual patient conventions tell us that, that people. Are frightened to ask about it for start because it's got a huge stigma attached to it.

Anthony Heard: Still, particularly men, gents, have got this cultural issue with talking about their health at all, let alone mental health. That really is a no-no. Um, and that's why that the majority of autoimmune illnesses are diagnosed in women. Um, it's, ITP follows the same pattern as most autoimmune conditions. It's about 60-40. Women 64% diagnosed, men 40% we think lasted because men don't get to see doctors. You know, if they did, they'd probably get diagnosed. Ladies have much more contact with the medical profession because they're just better at advocating for themselves. They just are, you know, and gents hide their light under their bushel quite a lot as we say.

You know, and uh, and in advocacy work, again, you'll see that it's majority ladies that get involved, gents are more an exception, though that's not necessarily always the case. But, um, so mental health I think is the big, big area. Education, information and awareness. I mean, you can't really take it much further than that, but it's getting it at the right place at the right time.

Anthony Heard: Again, because we've got all these well-meaning leaflets and YouTubes and podcasts and, you know, are we targeting the right people at the right time? Probably not. It's already too late. You know, they've already got it. They've been diagnosed. Do we need to get it out in, you know, to hospitals earlier so that specialists know what they're seeing when patients present?

Yes, I think is the answer to that. My specialist openly says, "I haven't got time. You know, I just haven't got time." Each family doctor here is given 10 minutes per patient. That's it. That is their target to get you in and out in 10 minutes. They cannot go far beyond that. They just can't. They haven't got the time, um, or resource.

Now, we think AI might do some of that. How, I have no idea. But this is the big hope that, you know, AI will, uh, and, and, and, uh, doctor's appointments like we are having now. So you'll never have to leave your house. You'll just be having a chat with your local doctor and he'll in some cases be able to weigh up what's going on with you without even meeting him.

So how that's gonna work, I don't know. But it's, it's something that we're hoping will relieve some of the pressure in our, uh, system at the moment. But, um, so in answer the question, mental health, definitely awareness and education information, you know, so it's getting it to the right place. Um, we're working on it. I mean, the ITP Support Association have worked hard to do that, but it's, um, it's difficult, isn't it? It's very, very difficult because people when they're well, don't really want to hear it, do they?

Alysia Thomas: I feel like that is why what we are doing is so important.

Anthony Heard: Yeah.

Alysia Thomas: Because by raising awareness, by being willing to open our mouths and speak about it by will, I mean, and you have to get a little vulnerable. I mean, not everybody wants to talk about how their illness has impacted them. Yeah, yeah. But by doing so, it normalizes it to a degree. And when it becomes something that is normalized, everybody I, I feel that is going to be the, the biggest way to, to bring about change. When they see how many people are impacted by these things, they say, oh, this is a large population. We should probably do something to support them. That's, that's my theory.

Anthony Heard: Yeah. That's right. Yeah.

Becky Miller: Well, and I think, I think even when, like you said, even if it's a smaller population for the rare diseases like ITP. There are a lot of rare diseases, a lot of autoimmune diseases that there's not a lot of research on.

Anthony Heard:  Thanks. Thanks for sort of what you're doing, because we're all in this together, aren't we? I mean, there's three and a half million people in the UK with some sort of rare disease. There are 85 autoimmune conditions of sorts.

Uh, you know, so that's a big number out there that, that, that just need a bit of direction. I don't want people to think it's the end of your life. I mean, you know, it's another life. Yeah. It's a different you, but it's, it's still you, you know, you, you don't become ITP, you know, you are not ITP. You are lots of other things, and you just happen to live with ITP, you know. You still like music, you still like, um, going to see live music - less than I did, but you know, nevertheless, still do. Live sport. Yeah. Still love it. Still love reading, still love writing, still love theater, still love cinema, still, you know, do other things.

But I didn't wanna throw too much negative stuff in because, you know, I think people just need to say it's part of life. You know, it's, it is, you know, it's, we're going from one end to the other, the best way we can. And stuff gets in the way, along the way. It does, it does for everybody. Every single person in this area I'm living with now will have something, even if it's not like ITP.

Stacy Griffin: Well, my friends told me, becoming disabled does not mean that your life stops.

Absolutely not. So, you know, having an autoimmune disease is a disability, but in some ways it's my, my friend who was hit by a car and lost her ability to walk.

Anthony Heard: Wow.

Stacy Griffin: Because she was paralyzed. We were having a conversation once and she said, "Stacy, what is going on is no different for me than it is for you."

And I'm like, "No, honey, I really think it is different for you."

Anthony Heard: Mm-hmm. Yeah.

Stacy Griffin: Yeah. She said, "No, what it is is something happened to me. Something happened to you. Life is different now, but it is still worth living."

Anthony Heard: Oh, of course. Yeah. It's just diverts you into other things, doesn't it?

Stacy Griffin: We, we can't dwell on the negativity, but we do have to face the realities that are placed in front of us.

Anthony Heard: Honesty is there. So, I mean, that's a fair point. And uh, I think you are right. You know, you do. But it is amazing the things it can, I mean, for example, I wrote a little verse and a friend of mine saw it and said, I'm gonna write a song about that. And I kind of thought, oh, I, and this is a kid I went to school with at five, so we've known each other 60 years.

You know, and you kind of think, wow, you know, that's quite powerful that someone I've known all that time, pretty much all of my life has seen enough in that to think, yeah, I'd, I'd like to express that in, in a song. And I thought, wow, you know, that, that, that, that's knocked me out. Actually, quite honestly, I thought he, uh, whatever it turns out, like I have no idea.

But, um, I just think, well, yeah, that's a power of, of connection, you know, in some way. And, and, and, okay, if he, as he I'm sure will, discuss that with his family and children and grandchildren, that's, that's awareness that. It's dropped a stone somewhere that's kind of rippled out to all this audience, you know?

And, and I don't know. It's not gonna be, um, I doubt it will threaten Stevie Wonder or anything, but I mean, it, it, it might, you know, I don't know. I'm sure put it on his music channel. I okay if 50 people see, if 3000 people see it, I don't know. It's worth having done, you know, and that has to be, you know, what it's all about in the end, you know, because we're long gone, aren't we?

You know, that's the bottom line. We've only got a short period to make any influence at all, you know, and you can sit and be no influence if you want to, but I'd rather not do that. You know, I'd, I'd rather, I'd rather think, well, I did something, you know, at least I, I did a bit, I did my bit anyway, you know, and hopefully someone else then will be inspired to do, you know, so well. I do.

Alysia Thomas:  I, I think we can all agree that you have done more than your bit. Yeah. I hope. I hope so. But you have contributed through with, with your honesty and your creativity and your advocacy. You're, you're making a difference.

If you haven't yet picked up Anthony's book, my Purple Patch, we'll have a link in the show notes.

Follow him online for more of his poetry, reflections and advocacy work. As always, we're grateful to be part of your support system. If this conversation resonated with you, share it with a friend. Leave us a review or connect with us on social media and tell next time. Remember, you are worthy of joy.

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