Ana-Iva Posted February 21, 2018 Share Posted February 21, 2018 (edited) There is a guy whom I know only from the TV and he is a minor celebrity. He constantly jokes about a feature of his appearance (others mocked him for it so he embraced it and made it into a joke). I read medical journals, news, and watch a lot of medical shows. There is a very rare disorder that is also rarely properly diagnosed by GPs as they have no clue about it. It is an endocrine disorder. I saw some of his interviews where he also jokingly refers to some issues he's been having with health and just takes it all as a part of life, stress, etc. It is actually a symptom of something according to everything that I've read (I accidentally read it at the same time he was talking about things). He is not receiving any medical help as he thinks he doesn't need it, but his physical appearance is not just him being ugly duckling, it is a symptom and exactly the same as on all other sufferers who don't realise what is going on. His parents look normal, so it is not genetics. I know what it is. I wrote him a polite letter, apologized for intrusion and told him about the physiology of the disorder I think he is having. I just told him that maybe it is worth looking it. I am planning to give this letter to him when I see his show, but I am having second thoughts about it. Is this too intrusive and would he take it the wrong way, or would he be grateful that someone went through trouble to tell him something that's in his best interest? I am keeping things confidential of course, it is his health, even though he has no issue talking about every aspect of his life on TV. He is pretty cool guy, but I am still thinking if I should do it. Thoughts? Edited February 22, 2018 by a LoveShack.org Moderator Paragraphs Link to post Share on other sites
basil67 Posted February 21, 2018 Share Posted February 21, 2018 Unless you have medical qualifications in the relevant area, I would not reach out. Far too intrusive. And without qualifications, you'll look just look like a nutty fan. 7 Link to post Share on other sites
Author Ana-Iva Posted February 22, 2018 Author Share Posted February 22, 2018 I'm not a fan or anything like that, just know the guy from the TV. And he is not that big of a celebrity either to have nutty fans. I do have a medical qualification, but I don't work in medicine. So you think I cannot even mention anything as a possibility to someone? I know that if someone mentioned to check something to me if I had an issue, I'd be grateful. But people are different. Which is why I'm having second thoughts on this one. I hope both of us will be sufficiently drunk at some point that I can just slide the topic into conversation. Link to post Share on other sites
basil67 Posted February 22, 2018 Share Posted February 22, 2018 I still think it would be inappropriate. 3 Link to post Share on other sites
Author Ana-Iva Posted February 22, 2018 Author Share Posted February 22, 2018 I still think it would be inappropriate. Even if I am right? 1 Link to post Share on other sites
basil67 Posted February 22, 2018 Share Posted February 22, 2018 Even if I am right? ......yes...... 2 Link to post Share on other sites
Imajerk17 Posted February 22, 2018 Share Posted February 22, 2018 (edited) If I were famous and some random came up to me w some unqualified medical diagnosis, I'd call over Security and have them handle it. I'd think she was at best a kook at worst a stalker. Mind your own business OP! Edited February 22, 2018 by Imajerk17 1 Link to post Share on other sites
Cookiesandough Posted February 22, 2018 Share Posted February 22, 2018 I think you should not. He will take offense to it at best, but I really don’t think he will even care much. If he has a condition which makes his appearance look interesting and he is a minor celebrity who banks on it, he probably already has heard of it. I mean even I have an idea of what condition you’re talking about and it’s not me. It’s easily google-able. Plus celebrities, even semi ones, have pretty much heard it all. Or he just doesn’t want to know. If it’s something a dr can’t diagnose why would he trust a rando online. I just don’t think so Link to post Share on other sites
ChatroomHero Posted February 22, 2018 Share Posted February 22, 2018 I don't know. If he has an email or something with whatever station he is with, I don't see an issue with sending him an email. Maybe he has looked into things with Dr's and they found nothing. I think an email saying something like, hey, I recently became aware of xxx disease and happened to hear you talking about ... and thought I would pass it along. It seems like you may be exhibiting some symptoms and on the chance you had not heard of this condition I wanted to let you know it might be something to look into. You are not diagnosing him, but on the chance he doesn't know it might be a disease or cannot determine the disease, he may welcome someone pointing in a direction. I would guess one of two things would happen: 1. He knows about the condition and has looked into it, so who cares if you alert him to it? Or 2. He doesn't know and can choose to look into it if he wants. I'd tell him...I'd just do it through an email or FB message or something private and non-intrusive like that. I mean if he talks about it on tv, it's not a secret and you mentioning it as a potential disease is not really offensive. Nothing to lose, everything to gain really. 1 Link to post Share on other sites
SevenCity Posted February 22, 2018 Share Posted February 22, 2018 Why wouldn’t you tell him??? If someone gave me a clue as to why I wasn’t feeling great I’d be nothing but thankful. Worst case he laughs you off as a loon. Best case he gets treatment for something that has been plaguing him his whole life. Sounds like a low risk high reward scenario. I recall this one friend of my ex wife who had constant medical problems hat no one could figure out. She want to another doctor who tested her thiroid and turned out it was out of whack. Once she got treatment her entire life turned around and she lost 15lbs she could not get off before. I’m sure if someone mentioned it as a possibility years before she would have been extremely grateful. Link to post Share on other sites
Popsicle Posted February 22, 2018 Share Posted February 22, 2018 Definitely tell him. If he is undiagnosed and wanting to know what he has, he will want to know. If he doesn't like what you have to say he'll just ignore it. Link to post Share on other sites
Soxfaninfl Posted February 22, 2018 Share Posted February 22, 2018 What is the disorder if you don’t mind my asking? Is it life threatening if it goes untreated (like diabetes)? It really depends what it is. If it is life threatening then you should tell him. Link to post Share on other sites
road Posted February 22, 2018 Share Posted February 22, 2018 Yes what is this disorder? I think you should tell him. Though if can find out his email I would contact him that way. He can read and handle it on his own. This will prevent him from thinking what kind of stranger just walks up and the first they tell me I have a medical condition. Link to post Share on other sites
anika99 Posted February 22, 2018 Share Posted February 22, 2018 He is not receiving any medical help as he thinks he doesn't need it, but his physical appearance is not just him being ugly duckling, it is a symptom and exactly the same as on all other sufferers who don't realise what is going on. His parents look normal, so it is not genetics. I know what it is. to be fair, you don't know what it is. You have a guess. It might be an educated guess or it might be a lucky guess or it might be a silly guess. Since you have never met this person, examined him, learned his family history, etc, all you have is a guess. You cannot say it's not a genetic disorder just because his parents are normal looking. Parents pass conditions onto their kids that they themselves do not have all the time. That is why you cannot possibly diagnose this person simply because you read and watch tv. By all means pass your guess along to this person if you feel compelled to do so but keep in mind that he has probably exhausted himself in the past looking for answers that never came or made a difference. He might act dismissive of his disorder now but rest assured that when he was younger and people were making fun of him he was doing his own research. So he probably won't appreciate a perfect stranger making the assumption that she knows more about his condition than he does but if you really want to do it anyways go ahead. Link to post Share on other sites
BluEyeL Posted February 22, 2018 Share Posted February 22, 2018 What is it ? Link to post Share on other sites
Realitysux Posted February 22, 2018 Share Posted February 22, 2018 what is it? I don't think you're qualified or close enough to him to give him a diagnosis. Link to post Share on other sites
Author Ana-Iva Posted February 22, 2018 Author Share Posted February 22, 2018 Thanks everyone who answered. I see that opinions are divided. I saw that his condition developed over time from photos online - normally, it cannot kill him unless the complications occur in which case he will not what hit him. It is so rare that doctors rarely make diagnosis and tests often show false negative. The only reason I recognised it is because I literally had a medical journal in my hands at the time and was reading about it when the information popped up on TV about him and his looks. That is how I looked him up at all, didn't know he even existed before this. I might go see his gig, he seems good. He is not happy with the way he looks at all but he's embraced it as he's been subject of public ridicule because of it. I feel sorry for the guy. I am not diagnosing him, just want to make sure he's considered the possibility and is aware. Guess if he wants to think I am crazy - which he shouldn't if he has any sense at all - his choice. As someone here put it, it is a low risk high reward situation. I have nothing to lose but this isn't about me as much as it is about not upsetting him. But he's been joking around about it publically so it shouldn't be an issue. I'll let you know what happens in a month or so. Link to post Share on other sites
Cookiesandough Posted February 22, 2018 Share Posted February 22, 2018 Well if the test do not show it and doctors will dismiss it then what use will it be for him?especially considering complications or problems haven’t occurred? He just looks different, you are not even certain he has it I just don’t see how it will do much good Link to post Share on other sites
RecentChange Posted February 22, 2018 Share Posted February 22, 2018 I read the OP's account, and I couldn't help but think of a This American Life story - OP, I think you will find the fascinating! https://www.thisamericanlife.org/577/something-only-i-can-see Long story short, a women who is disabled with a rare gentic disease, watches the Olympics, and spots an Olympian who she thinks suffers from the same disease (which can manifest in a few different ways). She ends up reaching out to the athlete, and notifies her of what she thinks she sees. Turns out she is right! And the "stanger" gets a much needed diagnosis. More on the story: https://www.propublica.org/article/muscular-dystrophy-patient-olympic-medalist-same-genetic-mutation Now, as for your story OP, I think giving him a note in person would be, strange. Especially as you are not a doctor etc. But perhaps send him an email if you can. 3 Link to post Share on other sites
Springsummer Posted February 22, 2018 Share Posted February 22, 2018 I strongly think OP should tell him. yes, it's just guess an OP is not a doctor. but OP is not treating him. OP is just let the person know OP's guess and let the person to investigate. Even a clue could be a life saver. btw, western doctor/medical professional is overrated. My womanly thing was extremely irregular for as long as I remember and went to quite a few Canadian doctors and the last was supposed to be a specialist in the respected hospital. None could really diagnosed the cause and thus no real cure for me. all they could do was give me the pill. long story short...I was cured by some Chinese herbs. and one traditional Chinese herb(I just use 1 root to make soup with chicken or lamb each time) works like a magic every time so far. so OP, definitely tell the person. Also if you don't mind, could you tell me what disease it is? it might be helpful to me or some other people here too. Link to post Share on other sites
road Posted February 22, 2018 Share Posted February 22, 2018 Long story short, a women who is disabled with a rare gentic disease, watches the Olympics, and spots an Olympian who she thinks suffers from the same disease (which can manifest in a few different ways). She ends up reaching out to the athlete, and notifies her of what she thinks she sees. Turns out she is right! And the "stanger" gets a much needed diagnosis. More on the story: https://www.propublica.org/article/muscular-dystrophy-patient-olympic-medalist-same-genetic-mutation Great story. Should read. Link to post Share on other sites
basil67 Posted February 23, 2018 Share Posted February 23, 2018 I think it's worth pointing out that the OP hasn't told us if this disease has a treatment or cure. Link to post Share on other sites
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