AcroTales
AcroTales
Episode 6 - Sheila
In Episode 6 of AcroTales we talk to Sheila from Trieste in Italy. Sheila is 51 and was diagnosed with Acromegaly in 2003 and is currently in remission. We discuss the complications leading up to diagnosis, how it impacted on her life and the excellent work she now does with WAPO - the World Alliance of Pituitary Organisations.
Hello and welcome to Acrotales, a regular podcast that explores the fascinating world of Acro Megaly. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. In each episode of AcroTales, I'll be talking to fellow Acromegalics from around the world about their journey with this unique condition. It's episode six, and I am really pleased to uh have Sheila from Triesta in Italy on the show. Sheila is 51 and was diagnosed with Acro Megaly back in 2003. Sheila, welcome to AcroTales. Thank you for being here.
SPEAKER_01:Oh, thank you, Dan. This is really exciting. I've never done something like this.
SPEAKER_00:Well, your contribution, I think, is going to be invaluable. Uh, because obviously you're a long-term acromegalic, uh, and you also do a lot of advocacy work with the World Alliance. Is it the World Alliance of Pituitary Organizations, I believe, WAPO.
SPEAKER_01:That's correct.
SPEAKER_00:Okay, we'll talk about that a little bit later on. Perhaps you could share your journey with us about how you discovered that you had acromegaly.
SPEAKER_01:Yes, of course. Uh well, the discovery of the tumor was uh by chance because I had been suffering a lot of headaches, but um between 2002 and 2003 I was uh working full time and I also was studying, which meant that I was doing university as a hobby, as I used to call it. And so I blamed all my headaches um on on the stress of working eight hours and then having to study for exams and handing in papers, um, in addition to normal life.
SPEAKER_00:So obviously the migraines and the headaches were a sort of big big indicator for you. So what did you do? You went to a doctor or or you know, how did you get the the diagnosis of acromegaly?
SPEAKER_01:Well, that was also um that was actually by chance because um following my mum's insistence, I went to a uh migraine specialist um at the um one of the main hospitals in Trieste, and that was in 2002. And mm I d something wasn't right in the way he was asking me questions. Um he refused to do any kind of blood tests, any CT scan or any MRI. But inside of me I knew this was not right. He was just basing his diagnosis on the food I was eating and whether I was keeping fit and um my daily routine and he asked me to keep a diary, which didn't make much sense to me, and and the reason I was doubting him is well, because that summer there I had just gone to visit some friends in Canada and I saw for the last time um uh my mm friend slash first boyfriend who had just been diagnosed with uh glioblastoma and had been just been operated and um you know I had already been suffering headaches at the time and I was popping pills and volume and whatnot and so that scared me a lot and but I said no it can't be that and but that sort of nagging feeling followed me um until the that that the rest when I went up to the uh specialist and um I was just popping more pills and then in October 2003 um I was working at UNESCO at the time. Um there's a big scientific center in Trieste and I was organized my my role was there as a conference organizer slash secretary and we had just organized one of the main flagship events and we were due to travel to China um on the 10th of October and well I I couldn't see anymore from one eye and so we went to our family uh optician uh ophthalmologist and she tested my eye pressure. She said there's nothing wrong there, but um because she is a glaucoma uh expert and uh she had seen a few um pituitary patients and so she um she said things to me which didn't make sense like how is your glucose? And I said, What is glucose? So I I had no idea what that was. So long story short, um she s stepped out of the room, went to call another expert, and she came back with a slip of paper, a phone number, and she said, You have to call the MRI in the hospital in Trieste and you have to go privately. This is urgent. And that got all my hairs standing up straight. And I said, Okay, and then I my mother called the hospital because I was in so much pain I couldn't even handle um calling. And the next day we went, my dad was away on business, and uh well when they um when they did the MRI they pulled me out. I wanted to do it without the contrast because my dad is allergic, so he stopped, um he said, Whatever you do, don't get the contrast. But halfway through the MRI, the technicians came out and said, Listen, if we don't use the contrast, you'll have to come back and pay the whole fee again. And so I said, Okay, well have fun. Try to find a vein. And so they did. They pulled me out and they said um they had really serious faces. And I said, So what's wrong? Oh, you have to wait. No, no, no, I said, No, I'm not waiting for the result.
SPEAKER_00:Tell me now.
SPEAKER_01:You have to tell me no. And that's the first time I heard the word pituitary adenoma. And I looked at them like blank and I said, Okay, listen, I'm not a doctor, I'm not ignorant, I know it's in my head, but where is it? Draw me a picture. And so the technician looked at me and he goes, Okay, so he drew a picture. And the next question I asked him, and they were in total disbelief, was listen, I have to travel to China for business in 72 hours. Can I go or is this a matter of life and death? And I remember they looked at each other and they said, You're going where in 72 hours? I said, China. I have a meeting and and uh well it's um you know, it's not easy to get a visa uh so quickly, uh so I'm part of the secretariat. I have to go. Can I go? And they said, Yes, you can, but when you come back you have to deal with this. I said, Okay, no problem. And the ride back home was very quiet. Uh my mother and I didn't say anything to each other because we had both so many things going through our head. And then my dad called and and I said, Right. Um I said, Dad, I have good news and I have bad news. And he goes, Uh do you think this is the time to joke? And I said, No, I'm not joking, I'm being dead serious. And he goes, Okay, so who what's the bad news? And I said, Well, I have a benign tumor. And he goes, and that's the bad news? And I said, Yes. And I said, So what's the good news? And I said, Well, it can be treated. And I said, You kidding me? I said, can be treated, and that's it. And he goes, Right, well, I'm coming home. So that was how it all exploded in my mind.
SPEAKER_00:And looking back, do you did you notice that you had changed physically? Had your appearance changed, had things like your you know, we uh on the show we try and always emphasize the symptoms. So had your hands and feet enlarged, your teeth changed shape, had you had sort of some of the typical symptoms of acromegaly?
SPEAKER_01:Well, in fact, that summer there in 2003, my mum and I always would go to Austria for the summer because it was cooler. Um and be just before then going, I went to my uh family doctor because I kept having these headaches. And I said to him, I said, Oh, by the way, my my shoes are getting smaller, and it was summer and which means I had open shoes, you know, like flip-flops and things like that. And he goes, Oh, don't worry about it. It's probably the heat. And I said, Well, what about my rings? My rings are not fitting anymore. And he goes, Oh, that's the humidity, don't worry. And so I said, Okay, well who am I to judge a family doctor, you know.
SPEAKER_02:Yeah, I think.
SPEAKER_01:So I I did sort of believe him. Um, but yeah, that that's how he shrugged it off.
SPEAKER_00:And had you noticed a change in your appearance at all? Had you noticed how you looked or um had that sort of ri remained the same?
SPEAKER_01:I had noticed that my right eyelid was drooping and um that that because of the pain I was always um I always had a runny nose and um but physically uh well I always had issues with my weight, so it was like always up and down, up and down. Um but other than that, um I couldn't really notice too many changes.
SPEAKER_00:Okay. Okay. And so you're obviously booked in for surgery, and did they tell you if it was a micro or a macro adenoma? Did they advise you of the size of it?
SPEAKER_01:Oh well the the the the plan to have the surgery was not so quick because my um parameters were off the charts. Uh when I went to visit the endocrinologist, he said, Well, uh we ain't scheduling a a surgery until we bring some of the parameters down. And um and yes, that's when I heard the first time macroadenoma. Um compared to other uh fellow acromegaly uh friends, mine was small, it was two centimeters, but nonetheless, in that small amount of space it creates havoc. Plus, it was around my carotid artery. So just to make it a little bit more complicated.
SPEAKER_00:And were you and were you frightened about the surgery? Were you looking forward to it? I think some people obviously react to it differently.
SPEAKER_01:That's funny. Um funny because when I think back is I just went back to work as much as I could, you know. I mean, once they told me, I said, okay, well, uh you have to wait, and uh I was fine, I was I knew everything about the surgery, I knew what they were going to do and how they were going to do it, and da da da da da da da. The nights before the surgery, it suddenly dawned on me, and oh man, I got I was not happy camper. And so I went to the nurse and I said, Right, can I have something to calm me down? Because I I'm super nervous. And so I don't know whether she actually gave me something or not, but you know, it suddenly dawned on me, what if I don't wake up the next day? Um, yeah.
SPEAKER_00:Yeah, I mean, you know, had you had major surgery before?
SPEAKER_01:Not in my head.
SPEAKER_00:No. So yeah, I mean it's a pretty scary prospect, you know, it's in essence brain surgery, but it's you know, it's a it's it's it's a very well isn't is it brain surgery? I guess it's pituitary surgery, I suppose, would be a a better description. But you know how close it is and you know the route up, and I think it can be frightening. And I think we also fear we worry about what our family are going through as well. That was always a thing for me.
SPEAKER_01:Yeah, and and you must think that well, um the 10th of March is actually my anniversary, um, which also uh overlaps with my mom's birthday. So my mom's birthday equals my surgery anniversary. And uh so you can imagine when they came to see me um in the morning, I was in a little bit longer than expected. And of course when I I I never had any funny side effects from anesthesia. So when I came out, all I remember is seeing this huge blob of of cotton up my nose and could only breathe through my mouth and my and a bit groggy, my mother going, Oh sweetie, are you okay? Is everything fine? Felt like saying, Mom, what do you think? But yeah, no, she had like my my dad was concerned, but being of Indian origin, he he was able to control himself, but her my mother was out of her wits.
SPEAKER_00:A bit all over the place.
SPEAKER_01:Yeah.
SPEAKER_00:Yeah. Okay. And so did you start to notice, you know, once the once you'd had the surgery, and I assume they removed the majority of the tumour, did you start to notice changes?
SPEAKER_01:Uh well, the surgery was actually just the not even the tip of the iceberg, but all the issues I would have had uh following it. Um uh my my body was not reacting uh as per book, you know, so my my body was quite resistant to the drugs. I felt like a guinea pig for a long time because they were trying to find the right combination of drugs um and the right dosage. Um every patient is unique, right? Yeah, right works for you doesn't mean it will work for me. And um and so I was in and out of hospital and you know, I felt like I was going into Dracula's den because I had to donate so much blood all the time. Um and uh it was very frustrating because the drugs were not having the effect that they were expecting and um I was not getting any better until the fine they found the right combination and I said, Right, okay, this is fantastic. And then what happened? Well, the uh administration of the hospital where I did the surgery where I was being followed refused to give me the drugs because they didn't believe that I needed them and so my endocrinologist got totally pissed off to say it nice way, and he called his colleague in Trieste because I went to another hospital, it wasn't in Trieste, and so here I was having to go to my endocrinologist in one city, but to pick up the drug at the hospital at the time in another city.
SPEAKER_00:It's very frustrating, isn't it, that side of things, and it's kind of you've been through enough, and the last thing you want is the logistics and the you know the red tape of all of this to be getting in the way.
SPEAKER_01:Absolutely.
SPEAKER_00:Um when all you want to do is get better.
SPEAKER_01:So Oh and and and by the way, something that I didn't mention, I had become diabetic.
SPEAKER_00:Right.
SPEAKER_01:So here goes the insulin Um which was a pain in the behind because I had to prick my fingers six, seven, eight times a day and oh man, and punch and and you know, jab myself all over just to get the the insulin in and I wasn't as worried about it. When they told me that I had diabetes, I said, Oh, okay. I mean, of everything that happened to me, you tell me that I I have diabetes, and you think I'm going to be worried about that? That was a side effect uh for me.
SPEAKER_00:Okay, Sheila, so it's been almost 20 years uh since your surgery, and uh congratulations for your anniversary of two days ago. When did you uh decide that you wanted to give something back in terms of advocacy? How did you get involved with you know sharing and spreading the word about pituitary conditions?
SPEAKER_01:Uh that was also by chance, because um uh once I started to feel a little bit better and I could uh drive again, my endocrinologist one day, uh this was in 2012, called me and asked me if I wanted to come to a conference that he thought was very important for patients like us. So I said, Okay, and uh well let's say that um he said, Sheila, would you like to become the president of a charity? There's not much work to do, and that's how it all started. So I uh became um the president of the regional nonprofit pituitary organization here in my region. Um and then that's how I began and that was really grassroots level and I realized that the that the patient organization was had been run until then by uh senior citizens. And uh I said, Well, we don't have Facebook, we don't have a f uh website, we don't have anything. How are we going to manage it? So I took a bit of took a bit of time to persuade the the the older board to to understand the necessity. But then I did. And then a year later I was invited to join the national organization and I became the uh representative when the national organization um was invited to events abroad because I was the only one who spoke English well enough to be coherent and answer. And from there in 2016 I um I became a member of WAPO. Uh I was I nominated myself and I was elected uh by the all the participants uh to the board and the following year I became a vice chair and that's how it really kicked in.
SPEAKER_00:Okay, and how you know uh what am I gonna ask you? Uh sort of like y you travel the world a lot, you go to various conferences, you're asked to talk. How have you seen the change in responses to say paturatory conditions and acromegaly over the years? Have you noticed a huge or a better increase in awareness? What are the what are the main things that you've picked up over the last few years?
SPEAKER_01:So um I've picked up different things depending on who I'm referring to. So uh if I go to um European conferences uh where there are a lot of um pharma industry, uh usually they are really keen to hear the patient's perspective.
SPEAKER_02:Yeah.
SPEAKER_01:Uh which is why I always did everything possible to chair or co-chair or speak in a panel or whatever was needed, I I wanted to be out there and share the patient's perspective as well as my story. Um but uh as as um a board member of a of this global organization, um, we have come to realize that the um uh the needs of the patients around the world are very different. And also the situations and the access to treatment and doctors is so vast that uh we can use the European model as a benchmark, but we have to make um um uh leeway, give leeway to other patient organizations because otherwise the situation is not sustainable.
SPEAKER_00:Yeah, and that must be quite a challenge. I I guess a frustrating challenge as well.
SPEAKER_01:Um not so much frustrating, but I think the realization that although we are global, there's only so much we can do because our uh support often stops at the border um for whatever internal governmental issues um or or um sometimes even corruption, let's put it out there, because this is quite clearly an issue. Um but we do support all our patient organizations with um awareness campaigns and uh when in need we try to give them a supporting letter so that the Ministry of Health understands the issues that these patients have and um and that's how we do. Of course, one of the major issues with us is language which I will never stop saying because we are global, but not ninety-nine percent of the world speaks English. So in the last year, because we have a lot of patient organizations in dire need from Latin America, uh when we do major campaigns, we now send them the template and they translate it into Spanish or uh whatever other language, French, uh uh German, because we believe for an awareness campaign to be effective, it has to be in the local language, otherwise.
SPEAKER_00:Yeah. Otherwise, you're only reaching a certain amount of people, aren't you? And uh that's not a that's not a global approach, is it? Okay, well, I think the work you're doing, obviously, with WAPO and and your own, you know, personal journey to uh raise awareness is fantastic. If you were to talk to somebody today, or if someone's listening to the show and they've just been diagnosed with acromegaly, what would be your advice to them? What would be your tips or things to think about?
SPEAKER_01:I would tell them to get in touch with their local support group and to rely on them to get their uh literature and to find a buddy or to speak to the helplines, something to help them cope with it and and then um make myself available if they needed any kind of support. Um and to be patient because this is um a disease that is chronic and it takes a long time to get to the point where you regain control of your life.
SPEAKER_00:And do you feel l that you're in that space now?
SPEAKER_01:Oh yeah, absolutely. I mean, 2012 was a a turning year for me because I managed to get my master's degree. A lot of other unpleasant things happened that year. Um, I lost my mother, I lost my dog, I lost my job. Um, but uh that's also the year that I said to myself, okay, um, it can't get any worse than this. Everything happened for a reason, so what is it that I'm supposed to do? And that's where my advocacy uh began. And I think inside of me I said, Okay, well this m this is maybe what I'm supposed to be doing. And I haven't stopped since.
SPEAKER_00:So it was like a calling.
SPEAKER_01:It was like a calling, exactly, and I can't explain it.
SPEAKER_00:No, I I I I can completely completely empathize with you on that. It's it you don't set out to do it, but it kind of just it it calls you in some way, and you just end up doing it. And not to make yourself feel better, uh, but you know, it's kind of the pursuit to try and help others in the in the long term.
SPEAKER_01:Exactly.
SPEAKER_00:Um and you're in remission now, is that right? So you're you're not on any medications for to manage this?
SPEAKER_01:Well, I'm on uh well compared to the beginning, I'm just I have maybe two, three medicines. Before I was just uh a subsidiary of l the local pharmacy. I had so many drugs and pills and everything. I was just overflowing. But now I'm in remission. I just have very few uh medicines I need to take.
SPEAKER_00:Okay. Well, that's fantastic news. And uh, Sheila, it's been an absolute pleasure talking to you and hearing your acro tale. And please keep up the brilliant work that you're doing with the with WAPO and your own personal advocacy. So thank you very much for joining us.
SPEAKER_01:And thank you, Dan, for inviting me. And I look forward to hearing to the uh uh the other tales.
SPEAKER_00:Yeah, please do. And uh like Sheila, if you want to hear other stories and you want to hear people sharing their acro tale, you should know what to do by now. Head over to acrotales.com where you can find the ever-expanding library of interviews. And of course, you can also subscribe to the podcast uh to receive the latest updates via iTunes, Spotify, and your favourite podcast app. So once again, huge thanks to Sheila. But this is me, Dan Jeffries, signing off, and we'll see you again for another.