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The Laura Dowling Experience
Understanding and Managing Sarcoidosis with Professor Seamus Donnelly #086
Unlock the secrets to understanding and managing sarcoidosis with renowned consultant respiratory physician, Professor Seamus Donnelly. We dive deep into this often-overlooked disease that primarily affects young adults. From the distressing symptoms of extreme fatigue to shortness of breath and persistent inflammation, Professor Donnelly offers a comprehensive look. With 70-80% of patients experiencing spontaneous improvement within two to three years, there is hope, but it’s crucial to get accurate information.
We also explore the broader implications of living with sarcoidosis, such as its impact on mental health, social isolation, and the necessity for supportive work environments. Join us for an enlightening and hopeful discussion on living with sarcoidosis.
Thanks for listening! You can watch the full episode on YouTube here. Don’t forget to follow The Laura Dowling Experience podcast on Instagram @lauradowlingexperience for updates and more information. You can also follow our host, Laura Dowling, @fabulouspharmacist for more insights and tips. If you enjoyed this episode, please subscribe and leave a review—it really helps us out! Stay tuned for more great conversations.
We want to talk about sarcoidosis. First of all, can you explain what it is?
Speaker 2:It's a disease that's hidden under the radar. When patients come to me, they often haven't heard of it. However, there's about 6,500 patients or individuals with sarcoidosis on this island of Ireland and they present with prolonged extreme tiredness, muscle pain, pains and aches in the joints, maybe with some sweating episodes, and some people will have short breath, and it can affect any part of your body, but particularly the lungs and the eyes.
Speaker 1:How can we raise awareness about it?
Speaker 2:This is why I'm doing the podcast is to get accurate information for individual patients rather than going on the internet and getting frightened.
Speaker 1:Welcome to my podcast, the Laura Downing Experience. Many of you will know me from my Instagram page at Fabulous Pharmacist, where I love to shine a light on topics that people normally shy away from. Today I spoke with Professor Seamus Donnelly. Seamus is a consultant respiratory physician and we discussed all things sarcoidosis. We discussed all things sarcoidosis. Professor Seamus Donnelly, it is such a pleasure to have you in the hot seat today.
Speaker 2:Thanks very much, Laura. Great to be here.
Speaker 1:We are here for a very specific reason we want to talk about sarcoidosis. Sarcoidosis exactly, and you are a respiratory consultant.
Speaker 2:Yes.
Speaker 1:And you have seen many respiratory illnesses in your time. But we're going to really focus in on sarcoidosis. So first of all, can you explain what it is?
Speaker 2:Well, it's a disease that's sort of hidden under the radar and when patients come to me and the diagnosis suddenly suggests them, they often haven't heard of it. But, however, there's about maybe six, six and a half thousand patients or individuals with sarcoidosis on this island of Ireland, so it's not uncommon and it generally is a disease of young adults 20 to 40 years of age and they present with extreme tiredness, prolonged extreme tiredness, muscle pain, flitting pains and aches in the joints, maybe with some sweating episodes, and some people will have short breath and some people will have pains elsewhere. And it can affect any part of your body, but particularly the lungs and particularly the eyes. Generally, what it is is that your immune system goes awry. It mistakenly believes that your body's under attack by an irritant or a virus and it switches on your own defenses. And normally when you get a viral infection, after a few days your immune system kicks in, calms things down, gets rid of the virus and the inflammation that it's generated calms down and things are fine after a week to 10 days. But in sarcoidosis your own immune system switches on. It churns out a lot of a specific protein or family brands going to fear on and they cause a lot of the symptoms of the tiredness, the pains and aches and so on and it persists and it persists for a year, two years or three years most people that present with sarcoidosis.
Speaker 2:It gets better over time. Takes two or three years. Most people that present with sarcoidosis. It gets better over time. It takes two or three years, but 70 or 80% get better and it doesn't come back in general for most people. But there is obviously 20% of people where it persists.
Speaker 2:And the problem with inflammation that persists is that if you get cut you get a scar. The natural history of inflammation is it ends in a scar. So if you've got inflammation in the lungs, you get a little bit of scar after a period of time. If your own immune system can't turn it off and the problem with it persisting for two, three, four or five years is those scars build up and that's damage Damage to the lungs, damage to the eyes or damage to the kidneys. That can be rarely damage to the heart and rarely damaged to the brain.
Speaker 2:So it is a disease of young adulthood. They are absolutely wrecked, absolutely knackered, can't do anything and they're in the peak of their life. They can't work, they can't contribute to society. They can't do normal family things. It's very tough for them and naturally they get quite low because this is persistent for a year or two or three. And they wonder is that it? And the first thing to say to patients when the diagnosis is made is you have a 70 or 80% chance that your own immune system will kick in and sort itself out within two to three years. So there is light at the end of the tunnel. It's a tough passage for two or three years, but there is light at the end of the tunnel. It's a tough passage for two or three years, but there's light at the end of the tunnel.
Speaker 1:And how do people get it?
Speaker 2:Yeah, that's a good question Because it's not a common disease like asthma or COPD or diabetes. So we don't have large 10,000, 100,000 people that we're studying. But we know that it runs in families. About a third of my patients at Talley University Hospital with sarcoidosis would have a relative, either a brother or sister, mother, father, aunt, uncle or cousin, with sarcoidosis. Some might have more than one person. So we know that it runs in families. So there's a genetic vulnerability. We don't quite know what the genes are, but there's a genetic vulnerability.
Speaker 2:We don't quite know what the genes are, but there's a genetic vulnerability. We know that from just the fact that a third of sarcoidosis patients can identify a close family member with the disease. And then we know that certainly in the lungs, the cells in your lungs, the defensive cells in your lungs, are behaving like they've seen a foreign irritant. So you're inhaling irritants and that primes your immune system to set off and then the immune system can't calm down, it just keeps going. So it's genetic vulnerability on the background of exposure. Now it could be irritants. You could be eating the irritants. It could be in the bowel exposure, it could be skin exposure. It could be inhaled into the lung exposure. The fact that the lungs are the commonest organ affected would suggest inhaled is important.
Speaker 1:So it isn't that people will pick up an infection and it sets it off.
Speaker 2:No, no, no, it's not an infection. You can't catch it, you can't pass it on, you know, like a virus to your family members or friends. So the classic example is the World Trade Center, 9-11. So 9-11 happened and then there was this huge cloud, which persisted for a long time, in Manhattan, of obviously irritants, toxins, that dust and the first responders in New York, the New York Police Department, the Fire Department, a significant amount of them are virus extraction. So the genetic vulnerability in this huge toxic environment and you know what A significant number of them gets sarcoidosis.
Speaker 2:It's known as World Trade Center granulomatous disease, but it's sarcoidosis by another name. So there are 100, 200, 300 people of fire department or firemen from New York that has suffered or are suffering from sarcoidosis.
Speaker 1:Okay.
Speaker 2:Yeah, so that's been the class. That's been an extreme example. So you have the Irish ethnicity, genetic vulnerability and then this very toxic environment as they're clearing it up in the next week, months afterwards.
Speaker 1:Okay, and what is the treatment for it then?
Speaker 2:And then this very toxic environment as they're clearing it up in the next week, months, afterwards. Okay, and what is the treatment for it then? So, essentially because you have a very good chance of getting better of urinary cord, we don't rush into treatment. If I had sarcoidosis I would be monitored by your symptoms, by your breathing tests, by blood tests, maybe by occasional CT scans or other tests. And if everything's heading in the right direction, as in it's self-remitting, then we just let nature take its course, let your own immune system relearn to control things and calm things down. However, if things are getting worse, or certainly if things are persistent and getting worse, then the treatment is immunosuppressive treatment. And the best tablet or treatment for calming or controlling inflammation is corticosteroids.
Speaker 2:And in asthma, you get a short, sharp course of steroid medication over a week, two weeks. It does the job. A short, sharp course of steroid medication over a week, two weeks, it does the job. You're back in society after a week to ten days after your acute attack. But in sarcoidosis, once you start steroids, you're on steroids for a long time. So steroids, as you know, has a significant side effect profile. So don't rush into steroids. If you're getting better of your own accord. We hold off. If you're getting worse and worse can be worse in the lungs, worse in the kidneys. If there's heart involvement, if your calcium's up, there's brain involvement, then steroids are the first-line drug and it's a significant dose of steroids. For example, in an average-sized person it might be 30 milligrams per day for three months.
Speaker 2:And then you decrease slowly by five milligrams per month and then some people, when you get to 10 milligrams, they're on it for a long time. And there's a Dutch database, which is probably certainly from a European perspective, on sarcoidosis. It's been there for 40 or 50 years. So their figures are that if you go on steroids, there's a significant chance you're on steroids for life.
Speaker 1:And can you explain why you know it's?
Speaker 2:not ideal to have a high dose steroids over a long period of time as well? Yeah, it's just, steroids are very effective at controlling inflammation, so that's the first thing to say. So the drug of choice for doing that.
Speaker 2:However, if you're on it for months, years and so on, then you have a significant side effect profile. It can push your blood pressure up, it can push your sugars up. Some people become diabetic. Obviously, you put on weight, and that's the first one. After a few months it can weaken the bones, accelerate osteoporosis and rather getting osteoporosis and tear arthritis when you're 85, it might come at 65. It's not that you get it tomorrow, but it does weaken the bones ultimately and there's a whole side effect profile of steroids that.
Speaker 2:That's why we don't rush into steroids. And then there's a number of people where you're bringing the steroids down and they get to a certain level and they can't get any lower. So then we have to add another agent that allows us to bring the steroids down lower, ideally off the kind of steroid-sparing agent, and this can be methotrexate, which you take once a week, or azathioprine, or it can be anti-TNF biological therapies that they use in rheumatoid arthritis, subcutaneous injections that you give yourself on a weekly basis. So at Talley University Hospital in our pulmonary fibrosis service we would have the largest number of sarcoidosis patients, probably in a single center in these islands, probably certainly in Ireland, and obviously we would refer to more complex patients. So we see a lot of patients where the sarcoidosis spread to involve the heart, which is rare, or the brain, which is rare, or the bones or, worsening, in the lungs. So we would see the more severe end of the spectrum.
Speaker 2:As I just want to emphasize, most people with sarcoidosis it's self-remits. It's a tough two to three years but it does self-remit and with a 95% 96% chance that it won't come back. When you talk to people it doesn't give you sarcoidosis. What accelerates sarcoidosis would be stress and when you talk to people, significant stress, significant illness of a loved one or death of a loved one, you know financial worries, work worries, family worries significant sustained stress accelerates sarcoidosis.
Speaker 2:The other thing that accelerates sarcoidosis is sunlight and excessive vitamin D in your system. So you know vitamin D is stored in your skin. So the sunlight the UV part of sunlight comes down, releases the vitamin D, becomes activated and then activated vitamin D is not good in the context of sarcoidosis as it pushes your calcium up and that's not helpful. It puts a lot of pressure on the kidneys. If it goes very high, then it is quite risky and you can have brain problems and you know you need prompt treatment. So that's one of the things about vitamin D is we don't recommend that people take extra vitamin D. You don't have to modify your diet, but you don't take multivitamins, you don't take fish oils. You don't have to modify your diet, but you don't take multivitamins, you don't take fish oils. You don't take the fortified milk.
Speaker 1:These are your sarcoidosis patients. Sarcoidosis patients yeah.
Speaker 2:And the other thing. So vitamin D a lot of. When we measure vitamin D, when the doctor takes a blood sample to measure vitamin D, they measure the inactivated vitamin D and the body's very sensitive about balance. So if it senses you have a lot of activated vitamin D which we don't measure, then it turns off the inactivated form. So if you're just measuring the inactivated form then you get a fright. Most sarcoidosis patients. If you measure the inactivated form, oh my God, my vitamin D is very low. There's a study from a few years back of just over 100 patients and 95, 96% of sarcoid disease have low inactivated vitamin D.
Speaker 2:Now this study also measured the activated vitamin D. That was high. So in fact the vitamin D in your body is generally for most. Sarcoid disease is generally with a normal range.
Speaker 1:So is it only when they go out into the sunlight and it gets activated then?
Speaker 2:So one of the enzymes that converts inactivated vitamin D to activated vitamin B is this thing called 1-alpha-hydroxylase. And for some reason there's a lot of things we don't know why in circulators, but for some reason, where the circulator is active, these granulomas, they produce a lot of this enzyme. So if you have a lot of inactivated circulating D which you munch in vitamin D because it's normally good for you, it's in multivitamins. It's in cod liver oil. It's in fish oils. It's good for the immune system good for your bones.
Speaker 2:It's good for you, with the notable exception of sarcoidosis. So if you're munching, like Smarties, vitamin D and there's a lot of inactivated vitamin D, well you know the sarcoidosis granulomas. The active part is well, I have a lot of this enzyme. Let's preferentially convert it to activated vitamin D and that pushes your calcium up and one in six patients are vulnerable to high calcium and you've got to be very careful. That's not good and that's an immediate indication for steroids. If your calcium is up and if it's very high, that's dangerous steroids. If your calcium is up and if it's very high, that's dangerous.
Speaker 1:Can you explain why it's dangerous?
Speaker 2:Well, first of all, you can get kidney stones, the most painful thing.
Speaker 1:Oh my goodness, so sore to pass, isn't it?
Speaker 2:Well, I can't. People tell me it's extremely sore. I've seen people, I've treated people with kidney stones. It is extremely sore but on a practical thing, it puts a lot of pressure on your kidneys and you can get kidney failure and kidney damage and then, if it goes very high, then it interferes with your brain function and that's not good, so you have to keep an eye.
Speaker 2:Now people say to me well, can I take vitamin D If your vitamin inactivated vitamin D is very, very low? There is some evidence that taking very low vitamin D is okay if you monitor your serum calcium to be on the safe side.
Speaker 2:Normally when you go to your GP or to your doctor you get vitamin D in 10,000 units, 15,000 units, and take it regularly on a daily basis. If you're going to supplement vitamin D and sarcoidosis, it's a few hundred units. It's two to four hundred units per day for a while. Monthly calcium levels just to make sure that you're not tipping over into high calcium.
Speaker 2:So you know it used to be that I used to say to my patients oh no vitamin D. But actually if it's very low and there are different measurements and different labs of different ranges, but if it's in the bottom 25 percent or 25 centile, then you should take a little bit of vitamin D but monitor your calcium on a monthly basis. But the general rule of thumb is you don't have to take added vitamin D because the blood level that they're measuring is the inactivated form. If they measure the activated form, the levels in total would be normal. So that's the background. So in summary, then your own sarcoidosis, where it's active, produces this enzyme. If you're taking extra inactivated VIN D, it accelerates the activated form and that's not good for you.
Speaker 1:Okay, can you tell me about what happens with the eyes and sarcoidosis?
Speaker 2:Yes. So what happens in the? So sarcoidosis is an inflammatory condition. So the inflammation can occur anywhere in the body. As I say, it favors the lung and the eyes. So in the eyes you've got, at the side of your eyes, inside your eye you've got the uveal tract. So it's a bit of tissue called the uveal tract and at the front of it the anterior part gets inflamed and it's called anterior uveitis and that's classical for sarcoidosis. So when an eye specialist looked into your eye he or she can look at the uveal tract and say, yes, it's inflamed at the front part, that's anterior uveitis and that's the classical finding in eyes and sarcoidosis. It's painful. If it goes on for two or three years it can cause scarring.
Speaker 2:So that wouldn't be good in the eye and but generally that settles down. Now some people, a small number of people, will get aggressive inflammation extending beyond that little uveal tract and, and that's quite did that. They go on steroids and they're on steroids for a long time and they may be steward injections into the eye or and or steroid tablets and or anti-TNF injections, biological therapies. So I would have a small number of people that generally, with eye problems, they settle down and they're usually the first thing to settle down. The last damn thing to go is the fatigue and that's the frustrating thing for patients.
Speaker 2:I mean, if I had a magic wand that would be fantastic you could deal is the fatigue, and that's the frustrating thing for patients. I mean, if I had a magic wand that would be fantastic, I could deal with the fatigue, because that's the most disabling symptom and it's the last damn thing to go. The eyes tend to settle relatively early, within a year or so, but the fatigue persists for the two to three years and then for 20% patients, unfortunately, it's longer than that.
Speaker 1:And how do they help with the fatigue? Is it just sleeping and resting?
Speaker 2:Basically, it's pacing yourself.
Speaker 1:Okay.
Speaker 2:So the first thing is to explain what sarcoidosis is to individual people, patients and their families, and it's a teamwork. Ideally it's the family Because, you know, we sometimes do family screening. You know, if there's two or three members of the family and they're worried about their adolescent children or their adults, or brothers, sisters, we sometimes screen families. There was a family in Offaly that we screened and we identified. You know they had four members.
Speaker 1:Okay.
Speaker 2:Between grandmother, three generations. There were four members, so we screened and there was two or three additional members. Now we screened about 30 people. There were two or three additional members, one of which was an 18 year old young lad who the parents just thought you know, he's 18, he can't get out of bed, you know, it's just normal. But he turned out to have low grade sarcoidosis.
Speaker 1:And when you're screening them, what are you looking for?
Speaker 2:Because you can't pick it up in a gene test. What are you actually? Yeah, so there's no one test. That's perfect, all right. So chest X-rays are normal in 10-15% of patients with sarcoidosis. So a chest X-ray 85% of sarcoidosis will have a normal chest X-ray or a normal CT scan of their lungs. The blood test we talk about there's, or a normal CT scan of their lungs. The blood test we talk about. We talk about an angiotensin-coverting enzyme, ace, ace-c blood test. But that's only raised in 40% of sarcoidosis patients. So 60% the ACE isn't raised. But if it is raised it is a good marker of your disease. So if it is raised in the 40% at the beginning, then you can monitor that over 6 months, 12 months, to see is it going down and that's a good marker of disease if it's raised in the first instance.
Speaker 2:Your breathing tests we do breathing tests to show is there any impairment and that's a good marker for those that have lung involvement. And then there's symptoms, obviously. And then the other thing there's markers of inflammation in your blood called a CRP. That's sometimes mildly raised. You know the normal. The normal is less than 5, might be 10 or 15 or 20. So all these it's a constellation of findings rather than one specific, and then you get an idea. And then if, for example, on your CT scan and chest X you have large lymph nodes behind your breastbone, behind your sternum, well then we can biopsy those and then we can get a tissue diagnosis and it can be done via bronchoscopy.
Speaker 2:So that's a day case, non-invasive. You get an injection, puts you to sleep test takes about 30-40 minutes and it's a little camera and a scope that goes through your mouth, past your voice box, into your airways and it has a little ultrasound probe at the side so it can go down and scan outside your airways to see where the nodes are close. And then it has a little needle that you can click and it clicks a few times, it takes a few samples. So this has come in in the last 10 years or so. Before that it would be a little surgical operation and you'd have to be in hospital overnight. So that's generally if the gland, wherever you think there's activity apart from the eye, you try and biopsy. So if this is, if the glands are up in your neck, the glands are up in your groin, you try and biopsy. You try and get a tissue diagnosis most times. So because, as you've highlighted, there's no one test that's specific.
Speaker 1:So you try and get tissue. And how long does it generally take someone to get diagnosed? Because I've heard of people you know being diagnosed with MS initially and then it's like, oh God, no, it's not MS, it's actually Sark. So how long in general does it take when people are presenting with symptoms?
Speaker 2:So unfortunately. Well, what happens is, you know, you go to your GP, you're tired, you fall asleep watching Netflix, you go into bed earlier, you're not able to participate in family life the weekends. Is that not just menopause? Well, that's a commoner cause. But then remember I said it's stress-related. So then GPs say well, your mother died two months ago.
Speaker 2:Or you know you've had problems with the mortgage. Paying back the mortgage is a lot of stress there. Or your poor old daughter is sick. So then they kind of say well, that's the reason you're tired. So there's often a delay in diagnosis and we did a survey a few years back now of Irish sarcoidosis patients and the delay can be three months to two years before a diagnosis is made. So that's frustrating as well and that's not optimum as well, because if it's going on for two years and you happen to be the 15 or 20% that it's getting worse, the earlier you can intervene. If it's getting worse for two years and you happen to be the 15 or 20 percent that's getting worse, the earlier you can intervene if it's getting worse the better, okay so.
Speaker 2:So a delay, a diagnosis of two or three years, it means the disease has been going for two years. Now we have self-remitting going away, that's fine. But if it's the 20 percent that it's slowly getting worse, and remember what I said, that you've got inflammation and the natural history inflammation at the end point is a scar. So you're getting a little hit of inflammation in your lung, a little bit of scar, then another little bit of inflammation, a little bit of scar. So year, two years, three years, that builds up and they say a third of your lung has to be affected before you begin to get a bit short of breath because you have a lot of spare capacity in your lungs. So the early diagnosis is important. So late diagnosis two, three to four years, particularly if it's getting worse silently, is not good.
Speaker 1:And for the 80% of people that go into remission and they never get it again do they have ongoing issues, sometimes because of that scarring?
Speaker 2:Most people would have no permanent'll have a normal life afterwards. We're not short in your life. Once it goes away, never to come back and you have a 95, 96% chance of that generally, then, Even if there's a little bit of damage done to the lungs, you know you have such spare capacity. You know there's a lot of petrol in that tank. Therefore it's compatible with normal life. So the vast majority of people, once it goes away, rant. The problem is that if it persists, or if it's not diagnosed and persists, that's you know. I sometimes get patients that are coming in very late in the disease. I had a farmer you know, from the Midlands who again had gone to the doctor. There was a lot of stress in the background and you know, 12 years later he pitches up to me and his lungs are not great at all and he's referred for lung transplantation. You know, 12 years later he pitches up to me and his lungs are not great at all Okay, and he's referred for lung transplantation, you know.
Speaker 1:My goodness, that must be very rare though, isn't it? That's very rare, and that's an extreme example. Yeah, okay.
Speaker 2:And that's, you know, in the last 10 years of practice. That's the one example. So it's that rare, okay, yeah.
Speaker 1:And it was interesting to me I read that there's actually more sarcoidosis patients than there are cystic fibrosis patients in. Ireland. Yes, but we hear a lot more about cystic fibrosis than we do sarcoidosis.
Speaker 2:Yeah, well, and that's a credit to the Cystic Fibrosis Association. They're very prominent, they're very active both in batting for their patients and their families and they're a very good pressure group representing the city of Barbados patients. One of the problems with sarcoidosis is that when you have sarcoidosis you can't do anything. You know you're not going to be jumping up and down with the politicians because you don't have any energy. You're not going to be going over the barricades saying you know we need extra support for sarcoidosis patients and then when it goes away, they really don't want to be reminded that they had it. It's a new chapter of life. I'm better now. Move on.
Speaker 1:Yeah.
Speaker 2:So and I can understand that completely so there is a very good support system for sarcoidosis patients through their Facebook page and through individuals setting up a charity currently Sarcoidosis Ireland, I think it's going to be called and that would be a support for people, particularly newly diagnosed people, who go on the Internet and get frightened Because the extremes are on the internet as you know. So getting accurate information and this is why I'm doing the podcast is to get accurate information for individual patients rather than going on the internet and getting frightened. Yeah.
Speaker 1:And is it 50-50 men versus women that get diagnosed, or is there more?
Speaker 2:I think there's a little bit more women. I don't think it's two to one, but there's a little bit more female. Essentially, it's a disease of 20 to 40 year olds. It's very rarely diagnosed in men older than that.
Speaker 2:But, there is a secondary in women in their 50s 60s. There is a little bit of you get a little blip there that for some reason that women are more you get it are a little bit more vulnerable in the older age group. But the main for women and men is 20 to 40 years. That's where the vast majority of my patients present.
Speaker 1:And are there other autoimmune conditions in families for people that have sarcoidosis? Would you see a trend there?
Speaker 2:Yeah, that's a very good question. So sarcoidosis autoimmune means the body reacts against itself. So sarcoidosis is an autoimmune condition and once you have one autoimmune condition then your increased likelihood maybe of getting a second autoimmune Not everybody does, but there's increased chances that you may be a second autoimmune. Not everybody does, but there's increased chances that you may be a second autoimmune condition. So in sarcoidosis I would see often an underactive thyroid hypothyroidism being associated with sarcoidosis, occasionally diabetes and autoimmune being associated with sarcoidosis. The vast majority of sarcoidosis patients just have sarcoidosis.
Speaker 2:But, then I would have maybe 10 or 15 patients with an underactive thyroid. Of the 700 or 800 patients with sarcoidosis I'd have. You know they talk about 1 to 2% of the population being diabetic. Well, those that aren't on steroids might be 4 or 5% of sarcoidosis patients. Obviously, if you're on steroids that increases your chances of sugars going up and getting into that diabetic range. But in the non-diabetic, non-steroid steroid naive patients then there's about a four. In my practice about four to five percent of my sarcoidosis patients will be diabetic and you said the sun triggers it.
Speaker 1:Do they have to go around with dark shades and spf on all the time or?
Speaker 2:they don't have to go around with dark shades, but they have to go around with SPF. They're high factor. They're nipping out to Aldi, not in an Irish summer now, but even a cold blue sky day in winter. It's the UV light part. They need to put on Factor X, then they're at Aldi to get the milk for 10 minutes. They need to put on the baseball cap or a hat and be lathered up.
Speaker 2:And then the other thing about sarcoidosis and the connection with calcium is that a significant number of and we don't know why, but a significant number of sarcoidosis patients, they churn out a lot of calcium in their urine, in their water, in their pee. So 40% of what's called hypercalciuria, so 40% have what's called hypercalciuria. The practicality or the risk of that is if you get run down or dehydrated it becomes concentrated and we're back to kidney stones again. So you get grit which is old, you get little tinges as you pass, but grit can form like a pearl, can form a kidney stone. You know that starts with a little bit of grit and then it forms a kidney stone. So what we always advise is that rehydrate. So two liters extra of fluids water is fine per day to keep the kidneys flushed through. And the other thing that increases your chances of grit and kidney stones if you have hypercalciuria is if your urine is more acidic. So a glass of cranberry juice in the morning with your breakfast, that deacidifies the urine. And then so the practical stuff. Most people don't go on treatment but they have practical stuff. You're nipping out daldi for getting the milk put on the SPF, put on the cap. Make sure you're rehydrated. Well, that's a creme de juice in the morning.
Speaker 2:And then the other thing is there was a in the Royal Free Hospital from some years ago now this could be 30 or 40 years ago. There was a paper that all new sarcoidosis patients presenting with whatever in the Royal Free got a liver biopsy. Now that was quite an aggressive thing to do 40 years ago but they did it and they showed that a lot of people, over 80% at a microscopic level, had liver involvement. So it's not just emotional stress or physical stress but stress to the body, all right. So if you stress the liver then that can be an accelerant for SARS that can make your sarcoidosis worse. So again, you don't have to modify your diet normal protein, but you don't take extra protein, you don't go in the gym and protein shakes. You know you're having your Christmas dinner. You have your turkey and ham. You don't have seconds. It's nothing you don't additionally.
Speaker 2:And the other thing, of course, is alcohol. So you've got to be careful with alcohol. With sarcoidosis, I'd say, if you ask most people, when the sarcoidosis starts and is active, their tolerance for alcohol goes down. They have two pints. It's like four pints. They wake up the next day and they're more tired. Jeez, that was a bad pint last night. So yeah, two glasses of wine is fine, but you don't go for the bottle. Two pints, fine, but fine, but you don't go for the bottle. You know two pints, you know fine, but you don't go for five or six. You just everything in moderation, as my mom would say. You know so, again, you know so. Stress, emotional stress, physical stress, you know. I don't know socially, I don't know many iron men and women, but I have a few iron men and women, sarcoidosis patients, running up Lugner Quilla with 20 kilos on their back. But that's an example, that's an extreme example of physical stress.
Speaker 2:So they have to moderate, obviously when the sarcoidosis is active. So, yeah, so these are the practical stuff. So you talk about excessive protein, you talk about rehydration, you talk about cranberry juice, you talk about sunlight, and this is with everybody. You don't talk about steroids, because most people don't need steroids. 80% are going to get better. It's a really tough two to three years. They can't work mostly they take time out and so it's an economic. You know their contribution to society is minimal for that period and it's really tough.
Speaker 1:And it can be tough for them to keep a job then as well, you know posted In general.
Speaker 2:It's the exception to the rule that businesses don't respect that, and obviously you know you're on full salary. If you're in the state service you're on full salary for six months. Then it goes down. So there are all these and every business is different, but generally I find that once there's a medical report and they're seen if they're a large employer, they're seen by their occupational health people they're very supportive Mostly.
Speaker 1:There are exceptions though, but mostly the age group is in and around the time that people will be having babies.
Speaker 2:That's right.
Speaker 1:So your female patients? How do they fare with all of this?
Speaker 2:What happens is that, anecdotally, what you'll find is that in pregnancy, obviously you're producing a lot of excessive female hormones steroid, steroid-related family and actually during pregnancy, the sarcoidosis often calms down. Okay, and the vulnerability is when the baby's born and these hormones are suddenly withdrawn and also you know so. Then you go to the GP with your little baby six weeks old.
Speaker 1:And you say I'm tired, and you say we just had your baby, you're in the blues.
Speaker 2:So that's another reason for delay in diagnosis. So I would have. So, in other words, so sarcoidosis patients it doesn't generally interfere with their fertility Because it's 20 to 4 year old female I would have. I would say you know, I've been in practicing in Ireland coming back from the States in 2001, so that's 23 years. I would have hundreds of women that have had babies. Fantastic, okay, no problems.
Speaker 2:Obviously, those in the 20% on steroids are a little bit more at risk, particularly, you know, if their lungs are affected and they've got poor lung reserves or other things going on. So we liaise closely with their obstetrician and if they need anaesthetists, with the anaesthetists as well, obstetrician, and with the. If they need a niece, there's with the anesthetist as well. So, um, and if you're in that 20 percent that the sarcoidosis has progressed, then obviously early referral to an obstetrician is important, is important, okay, so they can be managed and kept an eye on, you know, and I would be keeping a close eye on them as well as the obstetrician. Okay, um, but generally the pregnancy, the sarcoidosis calms down a bit and then the vulnerability is when your baby's born.
Speaker 1:For the next two or three or four months, oh God, so you need all the help you can get.
Speaker 2:Yes, so generally what I do is first of all fantastic. You know you're having a baby, we'll see you maybe in 20 weeks, so then we see you 20 weeks, and then we might see you at 35, 30 weeks, 35 weeks, and then we make an appointment for you maybe six to eight weeks after the baby's born, and then we see how things are.
Speaker 1:Okay, and what made you get into sarcoidosis as a subspecialty?
Speaker 2:Well, a great mentor of mine and a fantastic doctor teacher educator was Professor Marish Fitzgerald in Vincennes and Marish, so I am a Galway graduate, ucg as it was then. I don't.
Speaker 2:Nuig doesn't pull the heartstrings, or UOG as it's called now, but I'm a UCG graduate from a few years back, coming from a family of doctors, and I did my training, obviously in Galway, then Cork and then I got an opportunity to work with Marisha Fitzgerald for a time before going to Edinburgh, and he had the largest pulmonary fibrosis service in Ireland at that time, of which a significant proportion were sarcoidosis patients. So that was my first introduction and then his guidance, his training, his mentoring. I got into it and got very interested and then I went to Edinburgh and did a lot of research, clinical training, and they had a big ILD service there, so I was as part of my training. Obviously I was involved in that as well as other disciplines. And then I came back to Vincent's in 2001 and inherited Marisha Fitzgerald's practice. He was dean at the time, so he was stepping away from the clinical service, so I inherited his practice and then I became professor of medicine at Trinity College in early 2015 and I moved to Talley University Hospital.
Speaker 2:So that's where I'm based now and I'd say we have a significant number of sarcoidosis patients and the important thing when we're discussing diagnosis is to emphasize the 80% chance of getting better. And then, with the family, it's a team effort, with my guidance, with your husband, wife, partner, family members' guidance, working with you, we put a plan together. And the other thing you mentioned as well, with the fatigue it's important that you pace yourself. It's just anecdotal but a lot of my patients are very organized and volunteer all the time. You know mum needs to go to the outpatients yeah, I'll do it. The first communion party yeah, I'll coordinate in the school, the school sportsients. Yeah, I'll do it. The first communion party yeah, I'll coordinate in the school, the school sports yeah, I'll do it.
Speaker 1:I know someone that has sarcoidosis. That's exactly like you're saying, and she's listening to this now and she's going to know I'm talking about her.
Speaker 2:It's just anecdotal, but it seems to be a trait that they're very organised, very good people that volunteer for everything. So what I say to them is you've got to look in the mirror and learn to say no.
Speaker 1:Yeah.
Speaker 2:So, and if you don't want to upset people, say I'll think about it, and then when you take a step back, gently say no, but you can't. You have to pace yourself 80 percent. If you push yourself, sarcoidosis comes back to bite you in the bum the next day. Yeah, it's fatigue, you're just wrecked the next day. And the way sarcoidosis goes away is you don't wake up in the morning and say hey, it's gone, it's slowly. What happens is over.
Speaker 2:At the beginning, say over two weeks, you're wrecked. Every day You're getting up and saying, oh God, you know. And then you notice, maybe after a little while, six months a year, there bit more chipper, a bit more not normal, but you seem to be brighter, not as much brain fog, a little bit more energy. And the risk there is right now I'll catch up and you overdo it. And then the cloud comes down and what happens is that over time, that two days of a little bit more, it becomes four or five days, becomes 10 days, and then four days are not so bad, and on the days you feel more energy, you still go 80%. Four days are not so bad, and on the days you feel more energy, you still go 80% and that's so important, isn't it?
Speaker 1:because they feel like they're themselves again and they go nuts, and then they pay for it.
Speaker 2:Then and rather than you getting four or five days of reasonableness yes, I won't say normal, but reasonableness. The cloud comes down the next day and you're absolutely wrecked yeah, you mentioned.
Speaker 1:Yeah, you mentioned there about the cloud coming down and I know that's in a different context. But with these patients, with the fatigue that they get and with the fact that they can't work and maybe it's affecting their personal lives, reactive loneliness is this it.
Speaker 2:You know, I'm six months in. I can't do anything. Is this it? And you know they get socially isolated. They're in their house, they can't do anything. It's a really tough place. They're 21 years of age and this is, and you know, is this it?
Speaker 1:and they pull away from people as well, or they make arrangements and then they can't turn up and then you have people going oh that's the third time you've stood me up, type thing. So they find their social network kind of falls apart as well their distances. Yeah.
Speaker 2:And so, in other words, you know, as people are getting stronger, you know they're a year or two into it Can they go to the gym? Of course they can go to the gym, but it's a modest exercise. They're not doing Pilates, they're not doing a world record on the running machine.
Speaker 1:Or Ironman, or Ironman or woman Ironperson. We should say Do you know what I was going to say? This Ironman business, it's very un-PC.
Speaker 2:So, yes, so they can go to the gym and exercise is good. Everything in moderation is, you know, everything in moderation Pacing yourself 80% every day.
Speaker 1:And then how can we raise awareness about it and, you know, get government recognition for the condition.
Speaker 2:I was actually on to my sister as a GP this morning but she was busy in the clinical service. I don't I could be corrected on this. But in the health service there's a code for every disease and that means you can track diseases. You can say in Ireland there's now X thousand people, there's so many on disability, there's so many not at work, there's so many.
Speaker 2:I don't think sarcoidosis has a code, so that simple things you know has sarcoidosis or the different types of sarcoidosis code. You know not just sarcoidosis has a code, so that simple things you know has sarcoidosis or the different types of sarcoidosis code. You know not just sarcoidosis but lung sarcoidosis, other sarcoidosis, so we could actually track exactly what's there. So when I say there's 6,000 patients in Ireland with sarcoidosis, it's based on a study we did a few years back on county offaly. We just went to County Offaly and we went through and it's not. We went through all health records that we could access in County Offaly and came up with 85 cases per 100,000. And that's just a rough figure. So it could be 10,000 or it could be 4,000. But we think it's around 6,000.
Speaker 1:Okay, and would you say that there's people living with it, that they just lived through this awfulness, I suppose, for a number of years, and they come out the other end and they never get seen to. It's just they put it down to chronic fatigue.
Speaker 2:What I would say is that obviously, in any disease there's a mild form, there's a moderate form or severe form. I'd say the form first or the mild form. I'd say this is significant on people that for six months they just wrecked but the mother died, you know. And then they come out the other end and off they go. No one thought about fatigue. Take a chest x-ray you know, do a blood test.
Speaker 2:You know it's not. You know, and, to be fair, a lot of GPs are cluing in and it's much more part of the training that we introduce our medical students to, but there are times where GPs don't, you know. To be fair, you know fatigue, stress. The last thing you think about is you need a chest X-ray. You know.
Speaker 1:Yeah, and that's it. And it's about raising that awareness with our health care professionals too, because I had never even heard about it but for the fact that I had a patient who had it and her main symptom was eyes initially, but obviously it affected the lungs as well. So you know, apart from the you're teaching medical students, is there a way of making healthcare professionals more aware of the disease also?
Speaker 2:There was ISARC, which is a sarcoidosis support network, was set up maybe 20 years ago and COVID then it kind of it wasn't. It's not in existence now, but they used to, which was very good. They used to have information leaflets and would send it to all GP practices so the GPs would have it in their waiting room. So that was a simple way, cost-effective way of trying to raise awareness. But doing podcasts. You know I'm giving a talk at the British Thoracic Society in late November on state of the art sarcoidosis. So educating our other professionals, educating our GP colleagues, our other doctor colleagues, our healthcare professionals about sarcoidosis, Probably the other thing we should work towards is maybe a helpline a phone line or a helpline.
Speaker 2:Now the Facebook page is extremely helpful. Individuals can log on there and say I've just been diagnosed, I have this, that the other. And then you know, people are very good at coming back and saying you know, I had it like that and now I'm much better. Or I had it like that and you need to do X, y and Z or whatever. Give them a steer of how to manage it. But a more formal helpline would be helpful.
Speaker 1:And then you know, improving patients' rights, for instance if people are unable to qualify for mortgage assurance.
Speaker 2:Yes, now that's a big problem because insurance companies obviously they can select who they want to insure and if you have active sarcoidosis it's more challenging. Most so you're going for a mortgage. You need life insurance. You're in 20 to 40 years of age, it's the age where you are thinking about getting the first step on the ladder and most insurance companies will not take you on with active sarcoidosis.
Speaker 1:And will they charge you a much higher premium if you've had it in the past?
Speaker 2:Then there's one that will take you on in certain ways of active sarcoidosis, certain types, but it puts a premium on it's more expensive. And then there are other insurance companies that if you've had it as you've highlighted that if you've had it, it's gone away, never to come back. You know you're 40 years of age and you're selling one house and moving up a little bit, and you had it 10 years ago and it's gone. We'll put a premium on you, not all the insurance companies, but some will.
Speaker 1:Okay, yeah. Neurosarcoidosis, yeah. Can you just discuss that a little bit and tell me what the prognosis is for people?
Speaker 2:Okay, so sarcoidosis, it's an inflammatory condition that can occur anywhere in the body. Commonly it occurs in the lungs and the eyes, but it's in the body. Extremely rarely it can involve the heart and extremely rarely it can involve the brain. And when it involves the brain, the inflammation. There's two presentations. One is inflammation on the outside of your brain and that can be diagnosed by an MRI, given a specific dye called gadolinium, so gadolinium-enhanced MRI brain MRI and you can see it. You can see it basically shows where the scarring is in your brain, on the outside of your brain, and you can diagnose it that way. Obviously you can't do a brain biopsy.
Speaker 2:And the other place it can be affected is that you have a gland in the middle of your brain called the pituitary and it's in a little box surrounded by bone and it's very sensitive and it's very important because the pituitary produces key hormones, a variety of hormones that are very important with regard to living and normal living. So you can get a sarcoid granuloma in the middle of this narrow little box, so it puts pressure, and it puts pressure and the pituitary shrinks and isn't able to produce enough of these hormones. So that can be diagnosed well on an MRI. So they're the two areas that can be affected very rarely. So in the pituitary, so it's putting pressure in a narrow space and squeezes if you like, and the pituitary shrinks so it's not producing enough hormones, or on the outside you can get inflammation and then scarring and more inflammation and more scarring. And MRI can any of my hands. Mri will pick that up.
Speaker 1:And does that scarring in the brain cause brain fog or any of those kind of symptoms?
Speaker 2:No, Okay, what happens? Everybody gets brain fog. You know the long COVID syndrome.
Speaker 1:they get brain fog, which we're going to. You're coming back to me, aren't you coming back to me, aren't?
Speaker 2:you, it's been quite long.
Speaker 1:COVID, we'll see how I turn you out with this one.
Speaker 2:Another day, another day, but post-viral fatigue, your brain fog is very and so in sarcoidosis everybody gets brain fog, everybody. You know multitasking I must have the car keys. I need to go to the boot, I need to put in the dry cleaning. I remember go to the dry cleaning. I need to go to the boot, I need to put in the dry cleaning. I remember go to the dry cleaning, go to Aldi. That's impossible. Just one thing at a time. They often have to write notes for themselves. You know, put it on the fridge to remind them to do X, y and Z. So that whole brain fog situation is in most patients with sarcoidosis. It doesn't reflect brain damage.
Speaker 2:Okay, it affects. It's affecting the brain but it doesn't reflect brain damage. The scarring, which is very rare, I would say 15 to 20 patients out of 700 or 800. And I get referred automatically. So I would say maybe 30, 40 people in Ireland with significant brain sarcoidosis, the scarring you talk about. I would say that that's the sort of number and yet there's 6,000 patients. So it's very rare but obviously you need to pick it up early and keep an eye on it. And generally people like that, if they are in that category of inflammation because you don't want scarring in the brain or you don't want any more scarring in the brain, they're on steroids, they're on biological therapies, they're on other things to keep things under control.
Speaker 1:Okay.
Speaker 2:And they're on it for life.
Speaker 1:Do you get much government funding for sarcoidosis?
Speaker 2:No, Okay and it starts with it's not recognised, yeah, and it's very frustrating in all different ways. For example, as I've said in the podcast, there's a lot of things we don't understand about sarcoidosis and we need research, and we need research globally, you know, to work out why you got it, what are the particular pathways that are driving the brain sarcoidosis, the heart sarcoidosis, the lung sarcoidosis, and then what are the specific treatments that we can block that that isn't steroids? The holy grail is to give you treatment that works, that doesn't have the side effect profile of steroids or less side effect profile. So, for example, I have written probably 14 grants on sarcoidosis to various Wellcome Trust, health Research Board Ireland, various other grant funding bodies, non-funded.
Speaker 1:Oh, my goodness.
Speaker 2:I've written probably seven or eight cystic fibrosis grants and I'm 50 or 60% successful. You know, so it's sort of a catch-22. There isn't much funding out there so there's not much research being done. So therefore, so there's not much research being done, so therefore it's sort of, you know, it's self-fulfilling prophecy. So there's a lot of emphasis in grants health and social gain for the population at large. You know, asthma All right, there's a lot of asthmatics, a lot of people out of work. You know sarcoidosis is a rare disease.
Speaker 1:And because you can get over it yourself and it doesn't require an awful expensive medication. Pharma aren't in there for R&D either, which significantly affects how and to be fair, pharma drives the research agenda. Oh, sure, we know this the big bucks you're speaking to a pharmacist yeah, and pharma.
Speaker 2:So in other words, another rare disease, idiopathic pulmonary fibrosis, and we have I look after a lot of patients with IPF not a nice disease, scarring of the lungs. It gets worse. So pharma put in a lot of money. And then there was one company in San Francisco, startup, that showed in a phase three trial that their tablet could slow down the disease, that their tablet could slow down the disease, and Roche bought the company for I can't remember, was it five or six billion. And then suddenly everybody was all the other pharma needed to be in that space.
Speaker 2:So, suddenly billions was putting into and still is, which is great in working out exactly how and why IPF occurs. What are the specific pathways and novel ways of treating it that don't have much side effects. So what we need is we need one large firm to show that some treatment works and they can make money out of it.
Speaker 2:So, in America I was just at a conference in America a week ago that tablet for IPF costs $120,000 for the year. It doesn't cost as much as that in Ireland, but it's still expensive, but $120,000. So even though IPF is a rare disease, this is a lifetime treatment, so they can make money out of that.
Speaker 1:Yeah.
Speaker 2:So they can invest, so that they can de-risk by investing and then showing that they can make money out of it and profits out of it. Yeah.
Speaker 1:So it is one of those catch-22s, isn't it?
Speaker 2:Yes, because there's very little farm interest. And then the health and social gain for UK or Ireland. Well, you know you can't argue that it costs billions to the economy because so many people are out of work. But it is a disease that now, to be fair, we're just about to start a trial, that we're too, too. We're very interested in helping and we do our own research in sarcoidosis, and obviously we don't get any funding for it, so it has to be out of profits from other things. But um, we, we, we, we have a trial going on at the moment in the context of one of the things that was described. I worked in Rockefeller, a lab that was affiliated with Rockefeller in Long Island a few years back now, and next door to me in the next bay was Kevin Tracy, and Kevin at that time was the first to describe that if you stimulate your parasympathetic nervous system, you know you've got your sympathetic fight or flight You've got the sympathetic which you know gives you the adrenaline surge.
Speaker 2:You've got the parasympathetic, which calms things down. If you stimulate the parasympathetic it has an anti-inflammatory effect. It calms the inflammation in your body. So he's worked out the whole over the last 20 years or so. He's worked out the whole mechanism as to how that is. And now there's therapies in the States where they put a little cassette under your skin, they wrap a cord around your parasympathetic chain and a magnet comes and you put a magnet over your cassette for a few minutes every day, stimulates it and it helps people with rheumatoid arthritis, helps people with inflammatory bowel disease.
Speaker 2:And then what happened? About six years ago? Serendipitously, by mistake, because they were doing some research and they were measuring with ultrasounds the size of a kidney and the research fellow that was doing the ultrasound didn't work and he went to the University of Maryland was doing the ultrasound didn't work and he went to the University of Maryland, to the university engineering department, and got a different ultrasound machine, different frequency, and when they analyzed all the results they were all over the place. They were testing anti-inflammatory things. They were all over the place. So the PI, the researcher, the doctor said show me the research, show me what you're doing. Where did you get that ultrasound machine so long story short, if you stimulate the spleen with a specific ultrasound, you have the same effect as stimulating the parasympathetic.
Speaker 2:Okay so the idea is that, if you so, we have a trial going on where we get nine minutes of ultrasound to the spleen for seven days in a row never been done in humans before in sarcoidosis patients to see. Does it turn down your inflammation? So what it? And we've done a small number of patients and it seems to be having an effect.
Speaker 1:Really Okay, that's interesting.
Speaker 2:So we would be if anybody now. Obviously you'd have to come to Tala every day for seven days. So, if you're sarcoidosis and done a goal, that's a tough one. But, if you're in the vicinity and you're willing to help us out. Now what we're looking for is we're looking for sarcoidosis patients, known diagnosis where things have reactivated, where things suddenly you thought it was going away and suddenly it's getting worse and you're not on medication. You're not on medication.
Speaker 1:Okay, you're not on steroids, not on steroids, okay.
Speaker 2:And so you're steroid naive. And then what we do is we do a bronchoscopy, which we normally do for sarcoidosis anyway, because one of the ways actually get back to your question about activity, the most sensitive test for activity in the lung is to do bronchoscopy and put some. When the scope is in your airways, put some salty water down, suck the salty water back, send it to the lab. There's a CD4 T-cell which shouldn't be in your airways. It's there in sarcoidosis and the more that's there, the more active the disease is. So in this trial we do your bronchoscopy, we look to see is there excess CD4 T-cells cells? And if there is, then you go with your ultrasound for a week and we do the bronchoscopy again and we see does the CD4 T cells go down?
Speaker 1:Okay, and are they still activated and how many people have you done this on so far?
Speaker 2:We've done four Okay.
Speaker 1:And you've got good results so far.
Speaker 2:Well, it's early days yet. It's early days yet, but the CD4 T cells are going down and we're now measuring in those cells how active they are. We haven't got results on that yet, but that's what we're doing in the lab. But you know, if this panned out it would justify pharmaceutical industry or manufacturers of ultrasound machines or whatever, putting a bit of money into a trial.
Speaker 1:Okay, wonderful Globally. What is it like sarcoidosis-wise? Are there stats.
Speaker 2:Yes, so basically the places where it's most common is Scotland, ireland, the Celtic countries and Finland, sweden and Denmark.
Speaker 1:So northern hemisphere? Does it have anything to do with latitude and longitude, given the fact that the sun affects I'm all about patterns.
Speaker 2:So initially, 20 years ago, it was those damn Vikings coming and raping and pillaging and the genes. But we now believe that it's not necessarily that, but it could be to do with sunlight and latitude and longitude. We now believe that it's not necessarily that Okay, but it could be to do with sunlight and latitude and longitude. It could be to do with the origins that are more prevalent in these countries, but for some reason it's most common in Celtic-related countries Galicia, northwest Spain, brittany, scotland, wales, ireland and then Sweden and Denmark and Finland.
Speaker 1:Okay.
Speaker 2:So, and then in America it's those migrants. So the Swedish that have migrated to the Midwest, the Irish that have migrated to Chicago, Boston, new York. They're the ones now, and there's a particular type that 80% get better. And then there's another type that occurs in African-Caribbeans. So African descent or Caribbean descent in the United States, much more aggressive, much more associated with heart sarcoidosis, cardiac sarcoidosis would be rare, but they have an enhanced predisposition to getting involved with the heart, which obviously isn't good. So it can occur in African-Americans of African descent and also of Caribbean descent. So, yeah, so Caucasians that aren't Swedish or Irish much less prevalent Still can occur, but much less prevalent. Irish, much less prevalent Still can occur but much less prevalent.
Speaker 1:Okay, and is there anything that you would like, I suppose, the public, the general public, to know about people with Sark, or even Sark-Ardos' patient? Like to wrap this up, I think we need more.
Speaker 2:I mean just a practical thing. You know it's the health service for my patients to get a CT scan in the public system where the hospital urgent cases naturally get priority. There's a significant waiting list in my hospital but also in other hospitals. So access to radiology, access to tests. If I'm wondering, has a patient got cardiac sarcoidosis? Well, I want to do cardiac tests. So access to cardiac tests, you know, as an outpatient is, you know I can be waiting, technically speaking, if I don't go down individually and talk to somebody. I could be waiting 15 months for an echocardiogram. So a cardiac scan in my hospital.
Speaker 1:It involves you trying to push them through quicker. Is that it no?
Speaker 2:in other words I'd write. In other words, if I and it's the same in a lot of the hospital public system if I write just a normal in the form echo query, sarcoidosis, check this, that, the other cardiac sarcoidosis, you know, check how strong the heart is, basically Send it through, I'd be twiddling my fingers for a while. But if I'm worried about somebody I have to go down and say listen, I know I sent that last week, but it's really important. I'm really worried about the patient If there's a yearly cancellation and they'll help out when they can. But you know so that's the. It just adds.
Speaker 2:You know there isn't enough diagnostic resources in the hospital system, not just for sarcoidosis but for patients that are outpatients. And the problem with the outpatients is that ultimately, if they don't get prompt treatment, prompt investigations, than prompt treatment is that they become ill and they present acutely. So it's a vicious circle. And then it's, you know so. And then the hospital system gets. You know the A&E's are full, the hospitals I mean they talk about. You know you should be 85, 87, 88% average capacity to cope with winter surges, our hospital's 102%. You know we don't. There's no spare capacity in the system. So so, so, so that in the system so that puts a pressure on the outpatient service and then some of those people get sicker, have to present acutely and you know A&E gets a lot of publicity about the number of patients in A&E waiting, you know all that sort of stuff. But it's all about patient flow through the system. So there are many different areas which has to be worked on to seamlessly get the patient treated and backed into their community as efficiently as possible.
Speaker 1:Yeah, absolutely Okay. I ask my guests two questions after every podcast. Okay, the first one is what advice would you give young people today as a learned man? Follow your passion oh, did you follow yours?
Speaker 2:yeah, okay, yeah so I mentioned that I come from a family of doctors and I remember when I was maybe just after intercert as it was called then, now junior cert um, I said you know, I think I'd like to be a doctor.
Speaker 2:He said, okay, you've got to work for the summer, volunteer in the summer in the geriatric ward in Merlin Park Hospital. So I was there, I was shaving the people, I was cleaning up after them, having a chat with them, and after six weeks he came back and said okay, do you want to do medicine? Yeah, don't do to miss. So then I went to UCG and it's a great career, never a dull day. So follow your passion. Life is a balance and sometimes life you've got to compromise. But if you're a young person, don't compromise too early. What excites you? Follow your passion. Love it. What excites you? Follow your passion you know so that's.
Speaker 2:That's what I would advise people you know starting out in life, and it's a you know because you know. Unfortunately, I see people that did compromise a little bit too early and regrets them. So so don't. At some stage you'll have to compromise. Don't do it too early.
Speaker 1:And what is the meaning of life?
Speaker 2:Yeah, that's a good question. Yeah, contentment, getting the balance right. So I have a great job, exciting job, busy job, family life, touch wood, fantastic Coach, a lot of basketball. I love that.
Speaker 1:Do you, yeah, did you play back in the day?
Speaker 2:I did. I played National League for Galway Democrats. They're not around anymore, but I played a lot in college and then I played a little bit in Edinburgh when we moved over there. And then when my daughter was again maybe nine or ten years of age maybe eight, nine, ten, she said because her school was big into basketball and they just won an All-Ireland or something, she said, dad, I'd like to go basketball.
Speaker 2:So I had a few friends and I asked around and they said a very good academy in South Dublin was Meters Basketball Club. So I joined, obviously a few years back now, because I'm involved and she's I won't say what my daughter's age now, but she's, you know, late mid-twenties. So yeah, so I coach a lot about women's girls' basketball and then I'm also chairperson of Basketball Ireland. So I'm me and the board of directors, we're governance and oversight for the running of Basketball Ireland. So yeah, I've never a dull day, as I say.
Speaker 2:But, I'm very contentment Meaningful. You're content, you know and value to society you know, and contentment and that for me is the meaning of life.
Speaker 1:It's been an absolute pleasure to have you here today. Thank you so much for your time.
Speaker 2:Not at all, thank you, thanks, laura.