I am Brandon Westfall - 29 Year Old Male Who Hasn't Hit Puberty (Kallmann's Syndrome) - |AMA

Were there examples or stories that now seem fit the syndrome appearing in past generations on either side of the family?

My mother, brother, and myself moved away when I was 12. We lost contact with our family until recently.

After moving to Boise, ID a year and a half ago I spent some time catching up with my family and found I have several family members with the same condition. Two of my uncles have Kallmann's Syndrome as well as my aunt and her two twin daughters.

Had I been around family at a younger age I likely would have caught it in my teenage years which would have simplified things greatly.

Hello, fellow Boisean.

Hi!

How are you?

Howdy, from Texas!

'Ey up, from Yorkshire!

Gidday, from Auckland

Where in the world is Auckland o_0. Oh, and Hello to you good sir!

Hello!

Hi! ^{_^}

Does this mean you will live longer?

No. More than likely I will actually have a shorter life span.

I don't want to be curt, or dredge bad memories up, but what happened with your divorce?

Memories are lessons from the past, I don't mind sharing ;)

Lisa and I were both very young at the time. She was 19, I was 21. We were both immature and stupid. We were going through relationship issues mostly based on financial problems as well as me shutting her out of a lot of aspects of my life.

For some brilliant reason we thought marriage would solve all of our problems, clearly it did not. Over two years we started pulling away from each other more and more and in the end she ended up cheating on me.

Our entire marriage was a mess. A lot of it in part of my medical problems. While she knew I didn't have much of a sex drive she never knew why and she did not know how it impacted my life. I was very depressed during our marriage as well as the years after.

It was very difficult feeling my medical problems were the cause of our relationship failing. Even more-so since I did not know what was wrong with me.

I am glad I am in a place in my life where I can be open about every aspect of my life. One of the biggest parts of a successful relationship is communication. If you can't speak openly with the person you are with, it will never last.

What was your most hated moment with this?

There wasn't really anything in particular that I hated about going on the show.

Filming the back story was definitely the most difficult thing I did in the entire process. It was filled with raw emotion as I never really sat down and told anyone how this condition affected my life.

They had to stop filming several times so that I could gather my thoughts. I don't regret doing this at all though. I'd rather people see me how I was two years ago and understand how an invisible disease like this can destroy someone's life.

I read that hormone treatments can help. What are your experiences with the hormones? Have they helped? If so how much?

The first step of treatment is hormone therapy. Essentially I will need to be on TRT for 6 months - 1 year before I see any major changes. I've been on hormones on three separate occasions over the past two years, none of which were for long periods of times.

The biggest change i've had so far has been mental and that had little to nothing to do with hormone therapy. I am part of a very strong support group on facebook that has allowed me to open up about my condition and share stories.

That's awesome. Is there any cure or chance this gets better?

Things can most definitely get better over time with treatment but it is not curable. In very rare cases after being on treatment for long enough some men start to produce hormones on their own, but again, this is very rare.

This may seem a bit odd of a question, but I can't help and wonder... Do you ever go about your daily life acting like a younger person than you are? I'm sure it has been very hard on you in a lot of ways, but have there been any times where you were able to use your young appearance to your advantage?

What got me thinking about this was the andy milonakis show...

For many years I felt like it was demeaning for others to treat me as someone younger than I actually am, so no. It does have it's benefits though, especially when it comes to younger (legal mind you) women.

Go on...

If you would like further elaboration please explain what you want me to elaborate on.

It was more of a joke on you picking up younger women. But now I actually am curious about it. Do you pretend to be 18 or what do you do?

I prefer more mature women so I tend to look for people 24+ years of age. With that said, that doesn't stop them from pursuing me. I've had plenty of women 18-22 who constantly flirt with me and show interest in dating me. I do my best to act my age, if they don't like who I am they aren't worth dating.

Is the cure just a shit ton of testosterone? Because I'm pretty sure we could get a reddit-wide Tackle Football match going. All...whatever 100s of thousands of users on a large open field just tackling each other or is what I'm describing just an orgy.

LOL ^{_^}

There isn't a cure for Kallmann's Syndrome, but it is treatable with constant hormone therapy.

That first video made me cry. :( I can't imagine how isolating it feels. I wanted to say as an older woman you look like a man to me, and an attractive one, just a man with a very young face and higher voice. And I've met and seen many, many men who did not have hormonal issues who had the same appearance and sound. Looking at you walking down the street my first thought wouldn't be that you have a hormonal disorder, but that you merely look and sound younger than your actual age. Please don't hide away.

Have you ever thought of pursuing a relationship with someone who is asexual so that sexual compatibility and drive would not be an issue? There are so many people in the "ace" community who are seeking relationships and have a very difficult time maintaining one for the same reason.

Also, do you have any heart problems as a side effect of this? I have a hormonal disorder that required a medically induced puberty as I could not enter it on my own, and was later told that I could die without it, or at least been at huge risk. I was under the impression it was necessary!

Watching that episode of The Doctors makes me smile because I know how far i'v came in the last two years. I've never thought of myself as an attractive guy but I am quite a bit more confident now than i ever have been before.

I've never considered dating someone who is asexual as I only have interest in women and while I don't have much of a sex drive off of treatment things are very different when I am on TRT.

To my knowledge I do not have any heart problems. The only real issue I have outside of the obvious ones is osteoporosis and severe, frequent muscle spasms. I have them pretty much daily with the more severe ones occurring once every month or so. They tend to last anywhere from 2-4 hours at a time and spread to multiple muscle groups.

Asexual doesn't mean agender, it means someone who doesn't experience sexual desire for another person in one form or another. :)

Huh, interesting about the muscle problems because I have similar issues (though they started young and I was initially told they stemmed from my intense hormone therapy, they appear to be related to something different).

Also so glad you've come so far! While what I went through is barely a fraction of your own, I do understand the feeling of isolation you describe, and being demeaned for looking so young. While I was very fortunate my experience was limited, it remains a very sore spot in my life even though I eventually developed secondary sexual characteristics and limited fertility (was able to have kids) with intense treatment. I cannot stand hearing the constant refrain of, "You'll love it when you're 50" - that means crap when you're constantly being demeaned, patronized, looked down on and baby-talked to your entire life, with all your skills and intelligence being overlooked due to your appearance.

So very true. That's the comment I hear more than anything these days. "Oh wow you look so young, you will love this later in your life." I don't think people realize how much of a burden it has been in the past. I'd much rather look my own age...even if it feels like my body is falling apart inside of me. ^{_^}

Do you know James Westfall or Dr Kenneth Noisewater?

Not at all, who are they?

lol well played good sir, well played.

Since you haven't hit puberty, is your body like an overgrown boy's? By that, I mean do you lack body hair/a beard; I take it you are 'undeveloped', if you catch my drift?

Prior to the show I had no hair on my arms/legs, very little pubic hair, very little armpit air, no facial hair.

As for gentiles, my testes were, and still are the size of marbles. The only way I will see growth in my testes is if I have special hormone therapy dedicated to that specifically. My penis is within normal range but I can expect some growth once I start treatment. (5.4 inches length erect 4.2 inches girth)

Gentiles aren't genitals but they do have them. Some of us, anyway.

I'd correct the spelling but this is far more entertaining. :)

With the hormone therapy are you able to maintain an erection and climax now? I imagine that can be frustrating. Thanks for sharing your story!

I've always been able to have an erection and orgasm. Without treatment I am unable to ejaculate or maintain erections for long periods of time.

On treatment I can sustain erections like any other male. I am also able to ejaculate but it is in small volume and is likely infertile.

What's your favorite SLURPEE® flavor?

If they had cranberry that would most definitely be my favorite...until then Cherry will fill the gap.

How much did it effect your life?

What an insanely loaded question. KS has affected my life in major ways in pretty much every aspect of my life.

I was bullied heavily in middle school and high school for several reasons. I grew up in a small town and most of my fellow classmates knew I had been in foster care prior to middle school. I was very intelligent but I kept to myself. My medical problems added to this as I looked very young and could not physically do the same things my classmates could.

I did not date when I was in school as I focused strictly on work and school. I am very strict on who I date as I know exactly what I want from women and do not intend on sleeping around.

Finding work has always been difficult for me as physical jobs are very difficult on my body due to frequent severe muscle spasms. When I do find a job I am interested I am normally told I am over qualified or I look too young for the position I am applying for. (Yes, this does happen often.)

Outside of that depression has been a constant battle. I am a very emotional person and I do not do well with confrontation. I tend to shut down from time to time and keep things to myself.

When it comes to friendships you are either in my life or you aren't. I am very protective over my friends and tend to read them very well. If they are struggling with something I am normally pretty good at picking up on it and do my best to help them through whatever it is. Sometimes this causes problems because they aren't used to having friends who actually care. <_<

How has your social anxiety changed since the Doctors show? (Because you look pretty "normal" to me)

These days it is fairly mild. Prior to the show I had issues going out in public without having to worry about panic attacks. I still have the "I have to get the hell out of here" feeling from time to time but i've learned to control it.

If I was interested in males, probs would bang, you got nothin to worry about.

http://i.imgur.com/41zTWFD.jpg

haha thanks ;)

How did you react when you found out you had Kallmanns Syndrome?

At first it was a massive relief then I realized I still had a million questions and I knew I couldn't afford treatment at the time.

I was very depressed and even suicidal at one point prior to going on the show and getting diagnosed. Simply knowing what is wrong with me and having a very good support group has changed my life drastically.

Do you go to therapy? Are you okay now?

Have you tried online dating?

Any issues with weight or becoming obese?

Can you play sports or run really fast?

Thanks.

I went to therapy when I was younger due to being in foster care but it had nothing to do with my hormone condition. If I was not part of such an amazing support group on Facebook I am sure my issues with anxiety/depression would be far more severe. I will consider looking into therapy in the future as I am sure it could help.

I am ok with meeting people online and getting to know them but I prefer the aspect of meeting someone in person and taking them out on dates. I am very old fashioned and have a lot of respect for this approach.

I am currently 6'3" 192 lbs and have lost 42 lbs over the past two months. My weight changes very frequently but I have never really been obese. As a child/teen/young adult I was always very thin regardless of how much I ate or exercised.

I am sure I could play sports if I chose to do so but my muscle spasms tend to prohibit this. I am also a bit hesitant these days as I have broken several bones over the past few years doing very low risk things. (Lying in bed I have broken 3 ribs and my 4th metacarpal on my right hand due to osteoporosis.)

What's your favourite food? Yes, sorry it's a totally unrelated question but I'm dying to know

That is a very difficult answer to be quite honest. Most of the food I eat is based on texture due to my lack of smell.

I really enjoy Italian food, specifically Alfredo. I do not like fettuccine based on the texture so I normally order it with penne.

My favorite food to cook is chicken cordon bleu.

Have they said if the therapy will make your head match the size of the rest of your body?

My head does match the size of my body. Camera angles are everything.

Here are some recent pics of me: http://imgur.com/gallery/IFIFx/

Apparently your images offended many sensitive people in the comments. Imgur comments tend to be worse than youtube's.

Agreed, with 3.3 million views on youtube i've learned most of the people commenting are there to troll and nothing more.

Thanks for doing the AMA. It's something I didn't know about until today. May the gods be with you.

No problem, I am glad I can spread awareness even if I am currently unable to be on treatment myself. Thank you for the kind comments.

Thanks for doing the AMA. I just logged in to downvote each of the comments. Ignore the trolls - I think you're quite attractive.

Thank you ;)

Jeez, they got some horrible angles of you. Glad you're not a goomba.

What a flop of a movie eh? As much as I love Mario Bros I can't imagine a video game adaptation that could fail more.

Frankly, I love it, but I also liked the cartoony feel of Batman & Robin which is widely hated around here.

I honestly didn't mind the corniness of Batman & Robin. If you look at the old school TV version it was meant to be that way. Same goes for the original comics before they started to get more mature/serious.

Did you see Street Fighter?

Yes, enjoyed it.

Do you like having smooth cheeks or do you ever fantasize about growing a beard?

To be quite honest I don't think i'd ever be a full beard kind of guy. Maybe a 5 o'clock shadow at best.

How has your condition affected your relationship with adults on a daily basis?

Yes actually. For the most part the people I surround myself with are from a younger crowd. Not necessarily by choice, it just happens that way I guess.

Do you feel that you've been accepted by society as a whole, or are there still a-holes that make fun of you?

If you asked me two years ago? No.

Today? Most definitely yes.

I still see people viewing me as much younger than I actually am but I have accepted this is due to their ignorance. Once I explain my medical condition to them they normally understand and do their best to treat me as my age.

Thanks for answering my question!

No problem ;) All questions deserve an answer.

What's your favourite fast food place?

Interesting question. I honestly am not fond of fast food for the most part. When it comes to deep fried foods I cannot stand them. I assume it has to do with anosmia (Lack of smell), most fried food tastes like soap to me.

If I were going to pick a single fast food restaurant i'd go with Panda Express.

Cool, thanks for answering.

No problem ;)

How do you date?

I haven't dated anyone in 6 years. With that said, I date like anyone else.

I am the romantic type and take pleasure in spoiling the person I am with in every way possible. I am very old fashioned.

I look way younger than my age due to my babyface, skinny frame, and below average height. I am in my mid-20s but I've had people think I was at least 10 years younger. I've had a ton of trouble with finding employment after college. In job interviews, I always get the impression that the interviewers see me as too immature and inexperienced. Is this something you have experienced when looking for jobs?

I am currently employed so this doesn't happen at the moment. My co-workers know I am more than capable of doing my job with ease.

In the past it was a major issue especially when I was homeless as I did not have an address I could put on applications as my own, I did not have reliable transportation, and many employers thought I was too young to hire.

Do you find yourself attractive? Sorry if I'm being rude >~>

For many years I did not. With that said my lady friends have done a wonderful job helping me boost my confidence.

Do you ever have sexual urges? Like is there ever a little voice in your head saying "Jack it!Jack it!Jack it!"? also have you ever had an orgasm and what was it like?

I have sexual urges like any other male. The only difference is it is far less frequent then someone on normal levels of hormones. I covered this in another question as well but I most definitely can orgasm. With that said, I am unable to ejaculate without hormones.

Are you ever mistaken for being younger than you are, like at the store, or movie theatre?

All the time. I lived in Carson City, NV for 5 years. There was a casino across the street from my house I went to frequently. Even though they knew I was of legal age I was carded constantly.

Theaters normally don't bother with me as I tend to look over the age of 18.

I've been carded for spray paint and alcohol multiple times. I had a very bad experience with Wal-Mart a few years ago. I went in to pick up a case of beer for myself and my roommate at the time. I was carded as usual (I tend to have it out before I even get to the counter). The cashier looked at the card and questioned my age. She then called her manager over who then scanned my card which showed it was valid. In the end they still decided not to sell to me.

Does alcohol affect you differently then others?

I assume it affects me in the same way.

I don't drink very often by choice. I personally prefer vodka mixed drinks or straight shots and have a very high tolerance for alcohol.

I have never had a hangover, but again, I do not drink often.

Have you considered doing hormone therapy yourself? i know you can order the appropriate drugs online for different kinds of hormone therapy as well as the kits for blood work. it is highly advised you do not do it yourself because of the risks ( not having a doctors attention if anything seems amiss) but if you are well learned and cautious you can see a doctor for questions or just to oversee your results then maybe that could work for you. just a suggestion to look into if you havent got the money for the doctor. i too couldnt afford a doctor, i went once and i didnt have a job and it still costed a few hundred dollars.

I actually haven't considered this as I did not realize it was an option. I'll have to look further into it.

I do my own hormone therapy. It's not testosterone so it's easier, but still, pretty much all people I know that do testosterone-based HT do it themselves.

TBH, since it's in your own interest to do it right, you're probably a lot better off doing it yourself than with a random doctor who's likely to never have studied it deeply. At least that's what I feel after having to explain how hormone therapy works to every single endocrinologist I've ever been to.

I'll look into my options. Safety is an obvious concern but so is cost.