Team R A G E Ashjackson1 youre very welcome! You are definitely not alone. There are so many more people in the world with ks than we think there are. Theres also support groups on Facebook too
You’re really fortunate to have parents who noticed something early on. I was also fortunate to have been born in a city with one of the best medical centers in the world. The doctor had a hunch when i was born that i should be checked up on around 8. Sure enough, at 8 the doctors diagnosed me with KS, and treatment began at 10. So, that has given me a huge head start fighting against it. Thanks for sharing! Every bit counts
wish I had a similar situation, my parents didn't really know until I was 16 and still put off treatments or visiting a GP until a year later. pretty much suffered through high school because of it.
I'm 46 years old. Lived everything you described. Became a marathoner and Ironman. Thanks to testosterone. Gynecomastia was horrible when I was a teen. Was bullied. Watch for osteoporosis and hair loss in the future.Bone density very important.Keep watching those testosterone levels. Thanks for your story. Very brave.Take calcium and vitamin D. Very important
What an amazing attitude and approach you have to your KS. My own attitude to mine could not be more different than yours. I am in awe of the positive way you have been able to deal with it and also how well you have developed such a robust self-image. I truly take my hat off to you and everything you have accomplished.
Hey bro. Thanks for sharing your story. I am from Brazil and had the diagnosis of KS at 16 years. From 16 to 18 years old, I took 3 injections per week. Which made me give up! Today I am 26 years old and 6 months I returned the treatment. I feel much better and mostly I accepted that I needed the treatment to follow the life.
I have kallmann syndrome and have been quite fortunate because I have two older brothers that have it as well so my entire life I have known about my disorder and have been seeing doctors about it. Plus since I have my two older brothers (and a twin brother) that have kallmann syndrome I don’t feel as alone as others. I hope the best for all you other kallmann people. Remember there are more like you
X Traps X ask for a blood test and get your testosterone checked. Keep persisting ask different doctors. It may be frustrating and annoying but keep going! You know your body better than anyone
X Traps X i dont know the direct correlation between T and hand growth. Im guessing it would T would stimulate puberty which would stimulate body growth. But I dont know the exact relation. Youd have to research that and get back to me on what you find!
Hey Jason, I haven't seen you on Facebook lately and I am wondering if you are doing ok?? A lady has a son with Kallmann's Syndrome and lives in Melbourne Australia and was wondering if there was any one else from Australia in the group. I remembered you were. I didn't give your name I didn't know if it was ok. From David Patrick
Awesome video from Jason. Always good to hear from fellow patients around the world. It can be a difficult condition to cope with early in life so it is good to hear from somebody who has overcome the physical and emotional obstacles the condition can bring. Videos like this can help motivate fellow patients and help them with their own experiences with the condition.
plymouthlad38 Thank you so much! Really do appreciate your support and evreything you have done!! Especially helping me become more self confident and accepting of ks. This upload would not have been possible with it!
I also have the KS. It was diagnosed when I was 13. Im so happy that my classmades aren't much further in puberty than I 'cause my therapy started immedately after the diagnose. I have a LH and FSH therapy which is very expansive but it is paid by the university of Münster. Im from Germany and I hope my english isn't that bad. I would love it if you gave me an answer
How can I be diagnosed? I am 31 yo. No sense of smell from birth. Puberty was really delayed. But I could gain some serious muscles in 20s so I think I had some testosterone. Otherwise it would not be possible.. In 27-30s I had testosterone tested and it is in normal range. I had also sperm test. And it is very good. They even joked that I could sell the sperm heh.. I had a lot of friends and I was social kid until like 13 yo. Then all kids around started to go into puberty. They become interested in sexual things etc.. But I wasn't + I started to have very bad acne like from 14 to 20yo.. So I was just playing PC games all the time etc.. Childhood was great until 13-14yo. Then it was fucking nightmare. One big depression.. I also should say that I was using steroids from 23 to 27 yo. I started with them in time when everybody was telling me that I was on steroids, but I was natural. I just trained hard and eat a good diet. Funny thing is that I achive this with kallman syndrome apparently.. Now I have estrogen issues due to taking testosterone without antiestrogens.. So I need to take thyroid meds etc.. Now I do nothing but research about diet, biology. I am fucking home made scientist. :D
Kurtis Coleman great idea! Neil has a wealth of knowledge!! To get diagnosed highly recommend seeing a doctor and asking for a blood test and get your testosterone checked out as well
Jiří Hutečka Thank you for sharing your story thats so interesting! Re diagnosis you would have to talk to your doctor about get Testosterone checked as I cannot diagnose. High school can be so tough! Sorry you went throught depression. Im confused you were on steroids however were natural? Its great that you could build muscle and your sperm was T levels were good. Nutrition and biology are really fascinating what have you found so far?
Yes. I was able to build decent amount of muscle, but I had like no interest in sex. I think that accutane fucked my genetics even more. Then I started with steroids.. So my testicles are producing testosterone. I had just delayed puberty and T production kicked later like in 20 yo heh.... I highly recommend this forum hackstasis.com/ and things from guy Gbolduev. It is all about bio chemistry. To do hair mineral analysis. So you know what to do. What foods/micronutrients you need to balance your chemistry..
Hello! I am from Venezuela, I have kallmann syndrome, thanks for sharing your experience, I would like to know how you managed to get so much muscle, you only use testosterone? I use testosterone and for a while I was in the gym but I did not have any notable results and I was frustrated. Could you give me some advice? please.
Hey it also deepens on your training, what exercises, technique, intensity, structure, volume, frequency As well as what you eat, frequency, amount, is it the right food for you
Does any of you boys with kallman syndrome that on HRT get taller? I'm scared of the fact that I might not be able to get taller. My height is below average, I'm 149cm.
@@jasonrussell4429 hey Jason sorry for the late reply. I just got checked up, the doctor say I don't have Kallmann Syndrome because my testosterone levels is normal and my sex organ is developing well. But I do get worried about my height and my voice which hasn't become deep and I don't have a prominent Adam's apple. Now I would like to ask your opinion : should I get second or even third opinion for my case/problem?
Hi I've a kallmann syndrome, I'm taking testosterone injection monthly and only due to this I can grow a beard. I'm moving to New country by next month, my question is that what if I stopped taking testosterone injection, will I be able to grow my beard or it will disappear.? Please reply, waiting for your response..
I use to take the shots every month...my recommendation is to take the daily testosterone packets (Androgel). More balanced testosterone levels which means you will feel better overall. They are expensive but if you have insurance they usually cover it. I too have KS.
