IamA an 18 year old diagnosed with Kallmans Syndrome, meaning I never went through a proper puberty AMA!
I never have, but I definetly need to try that now!
I have anosmia so I cannot smell and onions just taste like onions to me when they're raw. Might be a specific variety that tastes like apples.
I'm trying it later, will try to update
So, forgive if it sounds vulgar, but what is the sexual aspects? Do you have a standard sex drive?
To be honest, I don't really know because I don't know what a "standard" sex drive is, I just know what I have. I guess the best way to describe the way I feel is if I have sex, great, but if I dont, whatever. In my ahem physical state at the moment, it would be physically impossible for me to have sex anyway.
Why would it be physically impossible?
Well, nothing has grown down there at all. Since birth. Look at a new born babies tally wacker and imagine having that your whole life.
You could probably take legal nudes and sell them to pedophiles for ridiculous amounts of money.
light bulb goes off in head
If you posted a dick pic would it be half illegal?
Depends on if they read or opened the picture first
How... big is it?
Damn, 8 pounds?
Yeah, let's just go with that
You should get /u/doubledickdude to lend you one of his.
Do you get horny/wet/erections? I guess this could determine sex drive.
Yes I do, but I don't think at the point that most guys my age do, it's pretty rare to get one.
Have you ever had an orgasm?
Not what you would think as an orgasm
Whoa whoa whoa. What?
Nothing... Comes out
This is how I've felt my entire teenage life and nearly now other then my tally wacker has grown, but I never had much of a desire to have sex until lately 22-24 and Im just now growing some stuble at 24.
Well you can always get yourself checked out. Trust me, there is no better feeling than finally having answers
How did you peers treat you as they began to age, and you... Didn't? I'm not trying to be rude BTW.
I mean my friends never really treated me different, they called me "baby face" for a while, but it was just in good fun, and then I thought I was just a late bloomer. The worst is meeting new people. When I tell them I'm going into college next year and they look at me weird and sa "oh, no offense but I thought you were going into 8th grade". In high school I played ice hockey and the locker room was one of the most depressing places for me. Seeing how everyone else had grown and developed, especially in their genitals (mine has not grown at all, like from birth), and I hadn't. Especially in my senior year when I was the oldest person of the team and freshman would think I was one of them. I refused to shower with them for that reason, which brought a lot of negative attention my way, but not nearly as much as if they knew why.
Huh. Thanks for answering my question so fast!
This is my first AMA, so needless to say I'm a little excited XD
Oh, another question! I saw in another answer about your treatment, and wanting to have kids. Say you couldn't physically have kids, but you had a partner. Would you be open to adoption or the like?
Of course I would be open to other means, but I mean, there is always something more special about having a kid you made yourself, and just knowing i cant do that makes it worse. That dosent mean id love them less because of it, it would just be... different.
What are you going to study in college?
Criminal Justice/Forensic science, specifically a crime scene technician
Dude, you could be a killer undercover cop if you look much younger than you actually are.
21 jump street, here I come
Dude, respect for playing ice hockey. A contact sport like that is hard, especially with the muscles of a child. Btw do you work out? What do you do for exercise, if anything? How does that work?
Thanks man! To be completely honest, I'm kind of overweight, which is the reason why I got checked out in the first place. My parents and I found it odd that after four years of varsity hockey, I could not drop the weight. This happens because my metabolism never rose through puberty. But hey, being a big guy helps in hockey too, makes you a force to be reckoned with
So if you fainted, could you still be woken up with smelling salts?
Yeah I think so
If I am remembering correctly smelling salts are ammonia and its a pain thing not a smell thing.
That is kind of what I thought, but I wasn't sure
Sorry if I come across as insensitive! How old do you yourself feel you look?
Well I can only see myself as 18, just because I know that's how old I am. Others on the other hand commonly think I'm still in middle school, like a 13-14.
How tall are you? Does anyone else in your family have Kallman's syndrome?
I'm almost six feet (by a quarter of an inch to be exact, every little bit counts.) And no, I am the only one that we know of. Although now that we know it's in the gene pool, some suspicion has been aroused about my cousin, who might be showing some similar signs. If that is the case, hopefully they can get it fixed before high school for him, because that fucking sucked.
with no sense of smell, doesn't that also mean no sense of taste?
Pretty much, u judge whether or not I like something almost solely by its texture. the only taste I do get is from my taste buds, which are your basic sour, sweet tastes.
Were you aware of this condition at an early age? If not, what age did you begin to wonder if something was 'wrong' and why did you think it?
I first noticed something was wrong when I played hockey in high school, and seeing kids my age WAY past where I was developmentally. I mean, before that I never was in a situation where I'd see guys my age naked before (and I don't mean that in a weird way). I was always too embarrassed to bring it up to the doctor, and when I was finally diagnosed, I wish that I had brought it up years earlier.
How come your parents didn't notice it, others close to you?
Everyone just thought I was a late bloomer, and no one knew that my no sense of smell could be related, who would?
has it affected your ability to put on muscle? I would think the hormonal imbalance would really mess with that
Yeah it does, I can pretty much gain the muscle mass of a middle schooler
What's the treatment for this syndrome? Will you ever catch up and be "normal"?
I am currently on a medication called Testim, been on it for about a week. To be completely normal, I don't know. I'll never have a sense of smell, and to be honest I don't think I'd want it anyway. Obviously the biggest thing for me I want to change is my gentalia, in my current state it is impossible for me to have sex, and I'm also infertile, which sucks because I really wanted kids one day. The doctor said a lot of the stuff that happens in regular puberty will happen, but maybe not to the full extent it would have if it happened naturally.
Is the infertility permanent or is it possible that the therapy can increase fertility?
There is a treatment for infertility, but it's a very long, drawn out process with no guarantee of success. I'd love to hear from someone who underwent it l though.
Do you find there are perks to your condition and if so what are they ? (I'm sure there are some...)
Well I can still order on the 12 and only kids menu at restraunts XD. Ummm, if I get a bone it doesn't leave a bulge, mlso I can walk freely with no shame. When I'm 30 I'll look twenty (unless the medication works, and I'd much rather prefer that). Plus having a lower than normal sex drive means that I can hang out with girls without having awkward urges around them.
I would imagine there are times when it's nice not to have a sense of smell.
It has its perks...
In another comment you said you wouldn't want a sense of smell? I have to say I'm a little suprised by this. Is there a reason? Granted there are bad smells, just as there are bad tastes, sights, noises etc. Also what's a part of your life that has been effected in a way you wouldn't have expected? Any problems with jobs? Relationships with friends or girlfriends? Sorry if this is long I kept thinking of more questions. Thanks for doing this AMA!
No problem! I'm glad to be able to talk about it a little more freely than I can with friends or family. I don't really want a sense of smell just because, to me, it's a whole new sense. It would be like gaining a superpower. It's not like when you were younger and you just became used to and learned the smells as you went, everything would hit me at once. That's like a blind person gain their sight while looking at the sun. It's just hard for me to miss something I never had. As for girlfriends l, never had one. I've always been kind of afraid to have one, to be laughed at when things get intimate, so I never really tried to get one either.
Hey, just as a suggestion. I saw you're using Testim (the gel I'm guessing?) and you also have no sense of smell. FYI, that stuff reeks. I used to use it (I have low testosterone) and my mom complained to me constantly about the smell. I personally could smell it and didn't think it was that bad (and all my friends said it actually smelled kinda good) but my mom and family said it was awful. So I'm just gonna suggest switching to Androgel if you can (basically the same thing, but a different less smelly brand). Androgel tends to be more expensive though, so if you can afford it or if your insurance covers it, I highly reccomend switching.
As for a question, how does anyone think you look like a middle school kid when you're so tall? I also have a bit of a baby face (since my own low testosterone), and I'm 22 years old and 5'6. People usually peg me as a 16yo, and its also attributed to my height in addition to my face. Which is why I wonder how anyone can think you're less than 16 at that height.
Thanks for the advice, I was supposed to originally get androgel, but the insurance didn't cover it. As fo your question, I guess it's just the baby face. I thought 6 feet was average for men, why do people keep saying "so tall"? I don't mean to be a dick, it's just that I'm still shorter than most of my friends..
Is this syndrome exclusively a male syndrome or do women get it too? And if yes, have you met any women with the syndrome?
Women can get it to, but not as likely as men
Does your condition affect your life expectancy.. like live a longer life than an average male?
Not that I know of
Holy shit this blew up, how do I go from three comments every few minutes to twenty everytime I refresh?
So are you still hairless all over? I don't personally grow much facial hair but the little I do is annoying as fuck. And how bout them pubes?
Wee bit of pubes and arm pits, but no face or chest. BARELY any arm and leg.
Ok, so I'm getting a lot of the same questions, so I'll just answer some of them here (I'm typing on my phone, so there may be a lot of spelling errors, sorry).
Why am I so tall if I didn't go through puberty?
Basically there are two things that cause puberty, the Adrenal gland and the pituitary gland. The pituitary is where the problem lies for me. This gland is responsible for several things, including growth, maturity and telling g the testes to fire off testosterone. For me, it is not doing the testosterone bit, which means all puberty aspects that are caused by testosterone (hair, teste growth, penis growth) were stunted, but my height is not caused by testosterone, so it occurred normally.
Will you post a picture of your face or dick?
My dick? No... just trust me look it up, you'll find plenty of pictures of the syndrome that look just like mine. As for my face, a lot of my friends use reddit, and there are some thing I'm talking about annonimously, some things that Im not comfortable about my friends knowing. If youre looking for proof, I can post a picture of my meds if you want.
Have you ever thought of getting into acting? I know many casting directors look for people who look young but are 18+ to get around labor laws.
Id totally be into that if I didn't have the acting skills of a potato spud
Have you ever considered adopting or having your future SO use a sperm donor?
Yes, if my fertility treatments do not work
If you had the chance to give yourself advice when you first discovered your condition, what advice would you give?
Start medication as soon as possible. 5he younger you are when you start it, the more likely your body will develop to the level it's supposed to be at. The later you wait, the less likely that will happen
Is the sense of smell thing always paired with this condition? I often wonder about myself (22yr old male, 5'7, have pubic hair/armpits/tiny amount of chin and can grow a whispy tash, none on my chest or stomach) If I have an extremely low testosterone level, people still say I look about 16/17 now and it's always bothered me.
Not always, I have what the doctor called the "classic" syndrome, which does cause no sense of smell, but you could have another for of it. Never hurts to get checked out!
How old were you when you realized you couldn't smell? It might sound like a dumb question, but I don't mean it that way -- I'm colorblind, for instance, and I know that I didn't realize anything was off until I got scolded in Kindergarten for coloring a purple sea and thought that it looked fine. Was there a moment like this for you when you realized that everyone else had a sense that you don't?
I don't remember when, it must have been around the first time someone asked me to smell something and I just stared at the blankely
so your wee wee will grow. what's the treatment like? a pill a day? a shot a week? tell me everything. and how fast will you go through puberty?
It's a gel called Testim which you rub on your shoulders, and I don't know how fast, depends on the person I guess
Sooooo... Are you the opposite of Robin Williams in "Jack"?
Never seen it
Did you see that your AMA was removed?
Probably because I didn't post proof
Are you a man or a woman?
Are you male or female? How tall are you? Do you have normal musculature?
Male, almost six feet, and no I do not
My friend also has no sense of smell but he can remember dates like anything. He also says that he gets his pleasure in eating from the texture of the food. He also says he hates eating tomatoes. How do you feel about eating tomatoes?
Blech, but ketchup? Orgasmic
You mentioned briefly your treatment. This is a hormone treatment then I imagine? Did the doctor say you would develop more physically? Will it help with your fertility?
It will not help with fertility, that is a whole 'nother treatment, but yes, she said it should push me along the puberty road (hopefully)
Have you ever eaten a raw onion? I hear that people without a sense of smell find that they basically taste like apples. Is that true?
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