AcroTales
AcroTales
Episode 2 - Jorge (JD)
In this episode of AcroTales, JD Faccinetti talks about his the long road to diagnosis, living with Acromegaly and what motivated him to begin Pituitary World News, a leading website that focuses on medical news and patient information related to the pituitary gland.
Hello and welcome to AcroTales, the regular podcast that explores the fascinating world of Acromegaly. My name's Dan Jeffries, and I'm your host, and in every episode we talk to uh various patients and people who have lived with Acromegaly, and uh it's a chance for them to share their story and the work they're doing with the condition. In this episode, I will be talking to JD Fascinetti, who comes from Argentina originally, uh, but moved to the US when he was about 18 years old and currently resides in California. JD, welcome to AcroTales.
SPEAKER_00:Dan, great, thank you. How are you? It's a pleasure to uh to be with you.
SPEAKER_01:Thank you very much. Well, it's really great to have you on the show. I am sure that a lot of people who are in the Acromakally world will know of your work with Peturity World News. And obviously we're going to talk about that. Uh, but Acro um tales is really a chance for people to tell their story a little bit. And maybe people don't know how you came to have AcroMegally or, you know, the symptoms or the indicators. And what we try and get across with this podcast is that every story is different. So how did it happen for you?
SPEAKER_00:Well, for me it happened uh, you know, after after a very, very long time of uh uh not being diagnosed as my doctors think, about 28 years, uh, and I had some hip problems, and I went to see an orthopedic surgeon um who actually was the one that said, I think you have uh acromegaly, because he had had a uh colleague of his that was acromegalic and had a tumor removed, actually, not not uh too far after I was uh you know uh diagnosed with a hip issue. So for me it was like uh uh literally a bucket of cold water. I had no idea, uh, like many of the stories we hear. I'm sure you you've heard of you know, uh people get bounced around doctors, they don't understand what's wrong with them, and all of a sudden somebody recognizes it.
SPEAKER_01:Yeah. The diagnostic journey or the diagnostic odyssey as they call it.
SPEAKER_00:Yeah, so for me it was a long one, uh uh which is one of the main reasons why we started pituitary world news, as you know.
SPEAKER_01:So we can talk about that uh a little later if you're so how many years would you say from sort of like initial symptoms where you were like, something's not right, to the point where you finally were able to give it a name of the R.
SPEAKER_00:So I you know, looking back, obviously on in hindsight, it's easier because now you say, Oh, now I know what that was all about. But I think that the uh my symptoms probably started when I was 38. I'm 65 years old now. So um I I started you know noticing uh pain, joint pain. I used to play a lot of tennis, and you know, I always thought, oh, it's because you're getting old. Um I started growing, I started, you know, my body started developing um later, uh, and that was a sign obviously that no I didn't recognize. But uh it was mainly joint and uh you know just growing, hands getting bigger, feet getting bigger, all that, all that. And then my features changing. My features change gradually. It wasn't something that you know said, oh boy, you look different.
SPEAKER_01:So did you find I think the jaw and teeth is often a really good indicator. Did you have any sort of dental issues?
SPEAKER_00:Yeah, I did. Not not uh you know, not too pronounced, but but I remember the dentist saying, Well, your teeth are moving a little bit, we can, you know, we can put you on uh uh uh orthodontics, and I you know I said, No, I don't think so. It wasn't it wasn't that pronounced. But now, of course.
SPEAKER_01:And also and also I'm 40, and you know, why are my teeth moving? Why why should I suddenly be having a brace? You know, this is the kind of thing you get when you're a teenager.
SPEAKER_00:Correct.
SPEAKER_01:But you never think, well, I must have a pituitary.
SPEAKER_00:Well, you never think that it's unnatural or unnormal. You think, okay, you're you're aging, and this is the way you you age, and this is the way what this is what your body does. I never thought that it was you know due to a uh disease.
SPEAKER_01:And so for you, when you were able to put a name to it, you said it was like a bucket of cold water. Did you I mean was there a was it like an allelujah moment as well? Was it relief as well as fear, or how was it for you?
SPEAKER_00:Well, it was uh uh fear at first, because I remember coming back home and you know, like all we all do, going to the Google and you know, you you all of a sudden a bunch of people that look like you show up on the uh on the page. Uh so I'm going, oh my God. But my my my next immediate thought was, how can this happen? How can you go 28 years without somebody not knowing that you know you have something like this? Um and then it was relief because I knew exactly what was going on. And after I had a meeting with my uh uh neuroendocrinology team that uh I was treated at University of California, San Francisco, uh which as you know is probably one of the best uh pituitary centers in the world, uh they, you know, they were very reassuring. They were very good. And they said, look, we can we in my case it couldn't get the whole tumor out, but we can treat it with medication and you know we'll get you back to normal, which, you know, whatever normal is after uh a disease like this, it's it's good. I've been feeling well and having to deal with um you know the related conditions that, you know, as you know, are pretty intense sometimes.
SPEAKER_01:Yeah. So so you didn't have surgery or did the same thing. I had surgery.
SPEAKER_00:I had surgery in 2010, uh uh transphenoidal resection of the tumor, which was quite large, and they resected around, I think they said about 95-96%, but the remainder was in the cavernous sinus or is in the cavernous sinus, and they can't really do much about it. Uh so I I uh take medication. Yeah.
SPEAKER_01:Okay. So that was a a macro adenoma rather than a micro. Is that correct? Yeah. Okay. Because that was something I learned actually when um uh we've bumped into each other at conferences, and when I was at New New Orleans, uh my tumour was about seven millimetres, and uh I you know, I I interviewed a girl called Lauren whose hers was seven centimetres. Yeah. You know, there's a big range. Yes, it would appear that those over two centimetres uh it's a much tougher struggle to get rid of all of it. Uh and the microadenomas have a much better chance of full remission.
SPEAKER_00:Yes, yes, you're absolutely correct.
SPEAKER_01:So are you on medication to manage the remainder then? You think you were, yeah.
SPEAKER_00:Yes. I take uh big visiment, which is summert, which is a daily injection.
SPEAKER_01:And so obviously, you know, it's a bombshell when you discover that you have acromegaly and this rare condition and uh and the impact that it has on your life from that point on. But obviously you turned this around and made it a positive. And so at what point did you think about um starting up Paturity World News?
SPEAKER_00:Yeah, so it was interesting because we had um uh been talking with uh Dr. Blevins, who was who is my uh neuroendocrinologist and now very good friend and partner on Pituitary World News. But we had been talking shortly after my diagnosis about the length that it takes to uh diagnose somebody or or people in general, you know, average for acromegaly is around eight to ten years, they say, which is an atrocity when you think about it.
SPEAKER_01:Yeah.
SPEAKER_00:And um so we had been talking about it, and over coffee one day we said, well, she he asked me pointedly what we what would you do? And I said, Well, you know, I think it's an issue of awareness. If we can start doing things to make people aware of acromeglia or any other pituitary disease, no, in our case. But uh I think we can create a dynamic where patients are smarter and they can understand that these these conditions exist and maybe ask a question to the doctor that's you know sooner than later. And the other uh part of it is to make physicians and healthcare workers uh put it so they put it on the radar, so they put it on the list of possibilities sooner. And I think if we can reduce, let's say, three or four years, uh then uh the related conditions would be lighter and um uh you know the quality of life of patients would be uh would be better. So I think there's that dynamic where awareness creates uh interest and interest creates people that get engaged and want to learn about things. So we we we uh he he asked me actually how would you do it? My you know I have a a communications background, uh so I it's this kind of work is sort of on my in my wheelhouse, like we say here. And uh and and we said, let's let's just get started, let's publish and start it doing in a in a in an interesting way. And uh that was in uh let's see September of 2014. And we've been going at it ever since, you know, growing steadily and getting um uh information and content and connections all over the world. And uh our as you know, our content is being shared uh through patient groups all around the world, and that's you know, it's very, very cool because it's actually helping. Um you know, we know it's helping because of the amount of people that write to us, but um, you know, it's been it's kind of taken a life of its own.
SPEAKER_01:Yeah, and I think what's what I found really good with it is that it's um you know, uh sometimes blogs such as this can um veer off into the very technical or the very scientific.
SPEAKER_00:Yeah.
SPEAKER_01:And PWN has always kind of looked at the patient voice and patient stories, uh, as well as the science and you know the medical information as well.
SPEAKER_00:Yeah. Well, we try to make it um so it's it's it's you know, it's uh it's it's easy to read and and and and uh it will create some interest. I think when you go through the journals and I mean it's just the information is very dry and sometimes very difficult to understand.
SPEAKER_01:So um and what do you think can be done then to work with uh physicians, specialists, and even you know, primary care, you know, GPs, general practitioner doctors that can um help speed up the diagnosis of rare conditions in general. You know, it's hard with just puritory conditions alone. I mean, uh there are over seven thousand rare conditions. Yeah how uh how do we how do we change that mindset to think the old adage of when you hear hooves, don't think it's necessarily a horse. It could be the zebra.
SPEAKER_00:Yeah. It's not easy because it takes a lot of work and a lot of money. And you as you know, physicians and healthcare workers are not easy to reach. And so what we do is we try to uh direct communications and content to some of the uh what we call um you know specialized publications. So we've divided um the audience into uh sub-segments so we know that you know ophthalmologists will read certain magazines and go to certain areas and um you know ph primary care physicians as well or nurses. So we try to get involved individually with these groups to either provide content or um you know uh connect with them in some ways, go to conferences, uh make presentations. I, for example, go to the uh European uh endocrinology conferences and um uh uh uh just to uh you know, in Spain and in other areas, just to get connected with different people around the globe, as well as nurses and uh, you know, like I was mentioning, ophthalmologists or people that have the opportunity, pharmacists, people that have the opportunity to recognize somebody with acromalia and perhaps say something or be aware of it when they see it.
SPEAKER_01:Yeah, I mean, um I had this discussion with uh uh in one of the other podcasts uh with Trinity who was uh who worked as a nurse.
SPEAKER_02:Yeah.
SPEAKER_01:And I think nurses play such a fundamental role in the potential early diagnosis uh of conditions. I think doctors and and specialists maybe uh can't see the wood for the trees sometimes, and nurses uh can be very clued up on all of the various symptoms and will spot things maybe on a more human level. Does that make sense?
SPEAKER_00:Oh totally, totally. I think uh uh yeah, nurses have uh that that opportunity. And the the interesting thing about the opportunity is that the opportunity about engaging nurses is what I mean, is that um once you see this disease, this condition, it's difficult to miss. You know, you recognize it immediately, which is even more interesting because um, you know, if you can make people aware of it in a in a positive way, I think they would I, for example, uh have a uh, you know, I do I go to a couple of medical schools and I make presentations to first and second year uh students. Uh and I can promise you that when I leave that presentation, none of those kids will ever miss anybody with acromegaly. They'll just even whatever practice, whatever area they practice in, they will know exactly what they're looking at. And because it's just a question that once you see it, you at least you'll put it in the in the um in the list of possibilities, no?
SPEAKER_01:Yeah, completely. I mean I think that's that's really important. And and again, I was at the Medics for Rare Diseases conference yesterday and and it it's about rare disease training as a whole uh for medical students and to introduce them that you know there is you don't have to study cardiology especially or neurosciences or neurosurgery or whatever it might be, that this rare disease world is a fascinating world in itself, yeah. Um, and the challenges faced of that early diagnosis and that early prognosis, and to try and reduce that journey, uh the diagnostic odyssey, they call it, from being bounced around from specialist to specialist, all of them scratching their heads going, I have no idea. And normally it takes a stroke of luck or a bit of fortune, or you know, you're sat in a restaurant and a doctor the other side of the room goes, uh um, you know, have have you ever heard of the word acromegaly? You know, it can take things like that until people are diagnosed, and that's the real challenge, I think.
SPEAKER_00:Yes, I totally agree. But you know, the the interesting thing about acromegaly is that you can physically see it.
SPEAKER_01:Um Although some people who don't have um uh they don't necessarily have the IGF one elevation. And I've had been at a couple of conferences and I've thought, have you have you really got Acromegaly? Because you don't see those pronoun the pronounced jaw or uh you know the large hands necessarily.
SPEAKER_00:Yes.
SPEAKER_01:Um that that seems to be a minority though, it has to be said.
SPEAKER_00:The imagery of Acromegaly sometimes is an interesting thing because people you know equate Acromegli with say Andrew the giant, and and then you say, well, you know, if that's all the imaging that we see, we don't see more sort of you know normal looking people with Acromegaly, then we're always going to try to find uh that um that image, you know, to uh somebody that looks so uh you know, the extremes, I guess. So um I think there's you know there's a balance on how to work towards early diagnosis. Uh you know, I think with Acromegley, if somebody's suspecting and runs an AGF1 and the AGF1 is elevated, then you know, that is a fairly easy um thing to do that would probably diagnose a lot of people um much earlier.
SPEAKER_01:There's a big campaign in the UK with the Peturity Foundation where uh the they really target dentists as being the first possible people to diagnose acromegaly. If they're seeing ch changes in jaw shape, position, teeth displacement, uh, you know, lower jaw coming forward in someone who's in their twenties or thirties, that's that's not normal behavior. Um and I know that if my dentist at the time had observed that, I probably would have had three years shaved off my diagnosis time. So yeah, you know there's another thing.
SPEAKER_00:I was just gonna mention there's another very interesting project in that is uh I don't think it's started yet, but will be starting in Barcelona with uh face recognition software. And they're trying to figure out yeah, they're trying to figure out because as you know, with with uh some of the face recognition software, very s very slight changes in in um in face, uh in the f in the in the way the face looks, uh that maybe uh and I the human eye wouldn't recognize it. Uh so there's a there's a group in in Barcelona at St. Paul's, it's called the hospital. Uh um and I I talked to them the last time we're actually going to publish some information on that pretty soon. So maybe keep an eye on pituitary world news about that.
SPEAKER_01:So what uh does the future hold for pituitary world news? Looking forward to the next few years. And for and for JD as well. What's what's on the cards for you?
SPEAKER_00:We are right now working on a version in Spanish of Pituitary World News. We're hoping to get that up in the next month or so. And uh we would like to obviously um grow, uh keep growing, you know, keep uh getting people to look at the site and download the information and share it as much as possible. Uh and uh, you know, trying to connect with people like you that are doing great work and uh uh you know just collaborate as much as we can. We we created pituitary world news as a platform for we call it innovation and creativity and collaboration. So the door is open to to to uh because this is not going to be one, you know, this is gonna be something that requires uh a lot of people working together to uh to make it happen.
SPEAKER_01:And do you uh has this been a cathartic thing for you? Uh because you know, I think we're all we all get pissed off that we're struck down with this condition that changes our lives and doesn't help and makes life a bit of a struggle. Uh has this been um is this a good sort of uh way of sort of releasing those tensions or you know, knowing that you're helping other people as well?
SPEAKER_00:Yeah, you know, you you think about all the bad things that come with a chronic disease, and then you think about maybe positivity and the gift that sometimes that a uh uh a rare disease can give you. And for me, uh pituitary world news was sort of a gift. I I enjoy doing it a lot. I I love the idea of maybe thinking about new ways of doing things that have been done the same way. Uh it's always had that opportunity in my career. Uh learn what people think and how you know, get insight from people to make the work better and more effective, uh, and uh try to engage as many people as we can. So for me, um, you know, in that sense, acromegaly was a gift. I don't think I would have ever thought of doing this if I wasn't struck with with this uh disease.
SPEAKER_01:So no, that that's fantastic.
SPEAKER_00:Yeah, and as you say very well, you you know, you you deal with a lot of related conditions. In my case, you know, uh joint issues and back pain and all kinds of things. But yeah, it makes it um, you know, you just don't think about it and you just get up in the morning and go on with your life and uh choose to maybe not pay too much attention to the bad things. I don't know if that makes sense.
SPEAKER_01:Yeah, that makes complete sense. And I think that really comes around, you know, maybe 10 years, eight, ten, twelve years post post-treatment when you kind of live start to live with the routine where the maybe the resentment of the condition has kind of vanished a little bit.
SPEAKER_00:Yeah, I think you know it's interesting for for me, uh the longer I get from my diagnosis day, the least as a the least I feel like a chronic patient. I don't know if that makes sense to you, but you just live with it. It you know, it's reality, and you know, you get up and get on with it. You know, there's there's other things to do.
SPEAKER_01:So get up and get on with it. Well, I think on that very rousing positive note, I'm gonna end this session of AcroTales. JD, it's been an absolute pleasure talking to you, uh, finding out more about Pachurchy World News and your own personal story as well. So I'm really, really grateful for you for your contribution today.
SPEAKER_00:Thank you, Daniel. It's been a real pleasure, and I hope to catch up with you soon somewhere around the world.
SPEAKER_01:I'm sure we will. And if if you found JD's story interesting and you want to hear other AcroTales, head over to the uh website acrotales.com where you can find the ever expanding library of interviews. And of course, you can subscribe to the podcast to receive your updates straight to your phone or your podcast app uh via iTunes, Spotify, and so on. So this is me, Dan Jeffrey, saying thank you very much for listening and see you on the next AcroTales.