I have Kallmann Syndrome.

[@agreementlocal113]

Hey, i just stumbled upon this video while studying for my meds licensing exam. its funny because my friends and i were talking about how 'low yield' (meaning its unlikely to show up on an exam) this disease is, and i come across this and i remember that medicine is about the people, not just diseases on a page that we memorize.

[@MaryamaAmina]

same here studying for same exam

[@teasp00ns]

I was recently diagnosed with KS, which is why I’m here, and your comment really surprised me in how kind it was. I hope your exam went well.

[@tdogchristy90]

Hey Nicole, Every now and then I'll google Kallmanns and see what pops up. I saw your video today. I'm a graduate student now but was diagnosed with KS back in high school. I just wanted to offer my support and good luck.

[@NicoleWarnerWrites]

Thank you!

[@sawdust1898]

I was also diagnosed with Kansas

[@gravitation-2024]

@@NicoleWarnerWrites Kallmann syndrome help kzbin.info/www/bejne/aHKqZXeqgq-lb8k

[@robynkoulakjian4350]

just stumbled on this. thanks for posting it. there are not many of us ladies with KS visible!

[@teasp00ns]

Related so much about the smell part! It’s something all my friends know about because it’s unique, I guess. But I never really discussed it with a doctor because I didn’t “miss” what I never had and didn’t really care, on the whole. Just didn’t seem like an issue. But if I had, maybe I would have been diagnosed sooner. That’s life I guess. Thanks for sharing :)

[@evelyngamble8596]

i was diagnosed with kallmann syndrome a few weeks ago, and i'd about lost hope of kids and that I was the only one going through this. i just wanna focus on graduating high school and not this disease, so thank you for giving me hope.

[@hinata6757]

Hey 👋 you can try consulting to an endocrinologist who knows our condition, it's not too late. Fertility in Kallmann's is a high success

[@shakirrapinnock3482]

Thanks for sharing your story! I hope all is well.

[@ChronicallyKaitlin]

I was also diagnosed with Kallmann Syndrome actually this year (2017) and have actually had 4 children. They found I completely lack olfactory nerves. Was super interesting to have revealed to me at 26 years old!

[@NicoleWarnerWrites]

Kashley G that’s fascinating! If you don’t mind me asking, did you have any external help to conceive? My doctor told me that I wouldn’t be able to conceive without the pump, so that’s really intriguing to me.

[@ChronicallyKaitlin]

Nope! 3/4 of my pregnancies were entirely unplanned. I didn't find out about my diagnosis until after our last child.

[@k-lynnsjogren4323]

I watched ur video and I just want to say I too have kallmans syndrome! I was diagnosed in 2014 at the age of 22. I also never told anyone about my anosmia growing up. I feared that no one would believe me or make fun of me! I was so relieved when I could put a name to what I was feeling! Thank you for sharing your story!

[@midrizzl6682]

I'm 14,I 100% have anosmia but I have signs of puberty like ejaculation,I can smell some stuff if it's quite close but I cant smell people, cars, etc

[@mrbarbella]

Thank you for sharing! I hope you're doing okay still!

[@mokhtarelghazouli3665]

hey nicole I saw your videos you are amazing girl. I'm from morocco and I have KS too, I'm happy we share something even though, it's a disease :D. please don't stop, continue like this

[@rgac24]

Hi I also have Kallmann Syndrome and never could find any one else that had it. I wish there was support group or some one in town to talk to that has KS. I was diagnosed late and causing a lot of social anxiety and issues. So if anyone willing to talk I would appreciate it.

[@kirksquirks5112]

I also have kallmann syndrome, despite having treatment I still kind of don’t understand my symptoms 😂 other than the lack of smell and delayed puberty

[@rgac24]

Kirks Quirks well if you need someone to talk please email me. It would be nice to talk to someone that also has kallmann syndrome.

[@rgac24]

My email address [e-mail]

[@KJAKo]

You can find groups on FB too.

[@rgac24]

KJ AK yes there are FB pages of groups. But I don't use Facebook , Twitter. I found some websites of groups but no one wanted to really talk to me. If they did they just say you will be fine or being very rude. So I like real people that have kallmann syndrome to email me. Because it be interesting to hear stories and ways you deal with it everyday.

[@maddydubois9044]

This reminds me of me. I am 16 and have no period and no puberty doctors don't know why. I also have no sense of smell! I'm gonna bring this up to the doctor as I've never told any doctors. I've always been worried that I can't have children maybe there is hope!

[@NicoleWarnerWrites]

Definitely ask about it! It's important to pinpoint it now so that they can help protect bone health before you're 25. Fingers crossed for you! :)

[@maddydubois9044]

Nicole Jade I feel like my bones are health would it really affect it?

[@NicoleWarnerWrites]

At this point in your life, probably not, but the main concern is for when you're older. Up until you're 25 or so, you can put on bone density; after that, you're pretty much stuck with what you got. Having a cycle (according to my doctors) indicates that you have enough estrogen to support that. If there's question there, usually they encourage 1) staying on top of vitamin D and calcium supplements, and 2) possibly going on hormonal birth control to ensure there's a consistent level of estrogen that you can count on. Doesn't mean your bones aren't healthy now, just making sure they stay that way. :)

[@maddydubois9044]

Nicole Jade I will check that out thank you! Is it likely like people with this can't have children or not?

[@NicoleWarnerWrites]

It's definitely possible! It just takes some hormone therapy for when you're ready to conceive. My endocrinologist told me that when I'm ready to have a baby, I'll have to go in and be put on a gonatropin-pump (kind of like an insulin pump for GnRH) which will signal to my body to ovulate and get ready for that whole process. Takes a little outside help, but definitely possible. :)

[@vanessamaetangon2488]

hi! may I know what were the laboratory tests and/or imaging that you took to diagnose kallmann?

[@a_ean3]

I'm so sad. I got puberty at 7, I guess I need to go to the doctor. The people told me I grew up too early, but they say that my face looks like a toddler. I'm confused and am wondering my diagnosis.

[@JeanAndrade72]

My English is still very weak, I would like at least one caption to better understand what was said on video. I also have kallman's syndrome

[@francescocaliendo8280]

I have it too... Good luck and stay strong

[@tinalofton2566]

Hey Nicole! Thanks for sharing your story! Any updates? I am 55 diagnosed at 16. I am trying to research long term effects of KS and am finding very little info. I One thing that did come up was insulin resistance/diabetes.😞 Let me know if you find more info in that area or your doctor could advise. Thank you!

[@woloabel]

Anosmia is indicative of Agenesis of the Hypothalamus or other Central Nervous System structures. Thelarche is indicative also of Hypogonadotropic Hypogonadism. I really hope all is good.

[@jasonrussell4429]

Great Video thank you for sharing! Also have KS and enjoy hearing about others journey

[@sarojkhanal708]

just came here after Studying about Kallman syndrome in First Aid USMLE- step 1

[@hugheaston7598]

I'd suggest going on proper estradiol and progesterone hormone replacement rather than using birth control. The synthetic hormones in birth control have side effects (such as depression, blood clots and an increased cancer risk) that you don't get with bioidentical hormones. The dosage of hormones in birth control is also too low to fully replace what your body would be producing if your hypothalamus was regulating your hormones correctly.

[@teresacastillo6373]

Please more info about bioidentical hormones

[@daphnashochat8581]

Hi, because of the side effects of the OCP, consider with your endocrinologist patches. Receiving your sex hormones directly to the blood, without it going through the hepatic circulation, is more "natural" and reduces risk of VTE. In Israel we use Evorel

[@emmag639]

Thanks for sharing! Out of curiosity, gow did you have a period at one point to begin with before hormone treatment?

[@rolfingerbier]

your such a lovely girl.i hope all your wishes come true.

[@frankiejane933]

I have KS and because its 1 in like 140,000 women get it I check every so often to see who is around because it is a lonely diagnosis. Its been 3 years ahah but I've only just come across this.

[@qwertyasdf1567]

But how did you go from having periods to not having periods? I thought Kallmann syndrome prevented puberty from happening in the first place

[@NicoleWarnerWrites]

That's how it usually manifests, but it's also not uncommon for puberty to try to start and "sputter", so to speak. There's a gap in my hormone conga line, so to speak--enough for the lining to slowly accumulate, but not enough to trigger to ovulation/release on a regular basis.

[@traceythomas9950]

Hey lady! Thank you for posting this! I have Kallman's too. Where are you planning on getting your pump?

[@NicoleWarnerWrites]

Sorry, I just saw this comment! The answer is soon, but not too soon, haha! I'm gonna wait until I'm ready to conceive for that.

[@balthasar5302]

Hey, welcome to the club! Not exactly the most popular one. :-/ I haven't yet made up my mind to test if I am infertile. I'm terrified of the result. But I'm living pretty good with my needles right now. Life goes on. :-)

[@bambina320]

Hello I have anosmia. But its weird because I can sense bleech, alcohol and vicks vapor rub. Like I know if my mom is using these chemicals. Also myself whenever i use alcohol to disinfect. I know a late uncle of mine from my moms side anosmia. He too was born with no sense of smell but I never knew if he ever smelled alcohol or bleech. He went blind in his early thirties I believe. Anyway so I never fully developed. I had a period years ago when. I was put on contraceptive pills. And that lasted about a year. I was like 24 at the time and hateted it. So I stoped taking them. I only had like 2 very short periods after stopping the pills. Im 37 now and no period. Also my chest didn't develop. They've grown a tiny bit over the years but my nipps look like 2 - 5 yr old id guess. Im pretty self conscious and get people staring. I dont wear bras a lot because idk they just feel so unconformable. I hate patted ones because it just feels weird and it make me feel worst whenever I did wear them because u know u wear it on day and like maybe the next day u dont and u go out and suddenly your flat again so yea people wonder. So I just stoped wearing patted bras for years now. I rarely wear any bras but if I really have to i'll wear sports bras coz they are more comfortable. Anywyay sorry for my long tangent. Hope all is well.

[@traceythomas9950]

Do you live in Alaska! I do too!

[@NicoleWarnerWrites]

I do! :D

[@ami8803]

interesting video! thank you for sharing your situation with us

[@gagananand4603]

I am suffering from same

[@legazpioppa4293]

You're still lucky though because you don't have pimples or acne or sagging eye while I am 24 trying to figure out how to look 14 again. 🤔

[@crazylegs960]

This is a great video I would recommend looking up inositol for women . Great for a lot of the information you have said

[@stork2889]

Hello! Thanks for sharing this, I am very lucky I don’t have this, I would be so sad if I would :( Also I’m a boy

[@pokerene8957]

Hi! I have too..

[@teresacastillo6373]

Irene M. Me too

[@apelsinovna]

The biggest fear here are side effects of HRT.

[@NicoleWarnerWrites]

As in estrogen treatments? Would hormonal birth control fall under that umbrella? The one they have me on seems fine so far, except my appetite is at T-Rex levels. Ugh

[@apelsinovna]

Nicole Jade do you take 2mg of estrogen? How long?

[@NicoleWarnerWrites]

Not currently--my OB-GYN prescribed Sprintec (norgestimate-ethinyl estradiol). I've been on it now for about 6 months, but I'm hoping to switch soon due to side effects.

[@apelsinovna]

Nicole Jade better is to take more natural estrogen like divigel or estrogel. Which side effects do you have? As I understand there was time when you had your own hormones?

[@NicoleWarnerWrites]

I would get randomly melancholic on this pill, and my appetite was through the roof. I thought it would even out, and it kind of did on the appetite side, but not the emotional part. I'll have to check those alternatives out!

[@ammar9940]

Me too

[@centarkvcentar850]

Hi everyone, does anyone have a dating site for people with Kalman syndrome?

[@titotitamoako]

are you married now?

[@sekainiheiwa3650]

how many vaccines did you get in your life?

[@NicoleWarnerWrites]

Sekai Ni Heiwa I’m up to date on all of my vaccines.

[@sekainiheiwa3650]

and only Kallmann? What a luck:D

[@ChadboyX]

its so hot u have no body hair at all

[@NicoleWarnerWrites]

gross