My Kallmann syndrome story.
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- Опубліковано 22 сер 2024
- Mark set up the original Kallmann syndrome support group, HYPOHH in the 1990's after being diagnosed with Kallmann syndrome at the age of 22.
He was the first person I met with Kallmann syndrome.
Through the HYPOHH group and the information booklet he wrote he raised the awareness of the condition and helped patients connect with other patients. The booklet is still available in PDF form.
We have groups on Facebook where patients can talk with other patients from around the world and gain more information on this rare condition.
delayed-puberty...
You have one of the most "legitimate" reasons to have been scarred by your childhood/teen years, and you in fact have turned it into a positive by starting a support group and writing a book. That is incredibly courageous and shows your mental and personal strength. You're a remarkable person, and having gone through emotional hardship, you have more depth of empathy than a lot of folks who had a happy childhood
May I just say you seem to be a lovely person and I sincerely wish you a happy life from here on in.
Thank you for this. Helping me with my studies and understanding as a medic. You are inspirational.
Thank you, for sharing My son who just turned 15 was diagnosis with Kallmann syndrome and this help a lot understanding what is going through in his mind and what to expect.
how he got diagnosed with Kallmann syndrome?Do you need bloodwork or MRI of brain to be diagnosed with that syndrome?Pls tell me
How is it going for him now ? How was the process and is it all good now ?
I'm assuming that you got your diagnosis more than 10 years ago and considering how long it took for them to diagnose you, I can also assume that Kallmann Syndrome was not as widely known or studied as it is today. I'm in medical school right now and I wanted to let you know that your exact clinical symptoms are now being taught in US Medical School Ciriculums, down to the very detail of your loss of smell. Your video has helped me immensely while trying to study what the clinical picture looks like, so thank you! You are helping people like you receive an earlier diagnosis and treatment!
I am 65, and I have Female Kallman’s Syndrome. I was diagnosed at around age 16 with primary amenorrhea. (1974)They didn’t officially call it Kallmans for a few years, but I was
treated with hormones from the
beginning. Later, when I got theofficial diagnosis, they addressed
the no smell thing.
Infertility, was, of course, a big issue with it. I married in 1985. By that time, there were some treatments available. First I did the GNrh pump with no luck. Then I went to Pergonal shots. By the third round, I got pregnant and had my daughter. Three years later we did it, and had my son. We were very lucky. However, I did have awkward moments in gym class when I had no breasts to speak of, and wore padded bras. My body didn’t really have a female shape, and I was embarrassed many times. It was hard as a young person. I feel your pain. I’m so sorry your marriage didn’t work out, and the infertility pain. I hope you are doing well.
I have too ks.i am 38 years old.im still single 😢😢😢
Really enjoyed your video. Keep recording these videos, they’re so important for knowledge about this syndrome! And props for the encouragement to express your feelings and experiences w us! You’re necessary.
I just came across this video, & am going to look up your book. My son just turned 18, & I am certain he has KS!! It seems NO doctor around us has even heard of it, but he & I both have researched online & are convinced. We are seeking help daily, but getting in anywhere is very difficult. 😢
delayed-puberty.com/
If you send me a message I will try to help with any questions you may have. It is important to be seen by a reproductive endocrinologist who can run a full hormone profile. Puberty can start at different ages but once you pass 16, the chances of self correcting delayed puberty decrease and there is a different reason why puberty has not started.
If your son has no sense of smell or problems with his hearing it does make Kallmann syndrome more likely.
Very interesting, I've never heard of this condition but I'm aware of it now. You've had a pretty tough slog mate, but you came out on top in the end. Honestly you look like a typical bloke to me so try not to let those negative thoughts caused by ignorant peers from years ago take up your time. Like so many people I copped a certain amount of bullying at school. But later you realise they did that because they were motivated by their own issues and insecurities. Under stress some take the high road by banding together and supporting each other, bullies take the low road and project their stress onto others, especially the vulnerable. Anyway, just wanted to say your strength, perseverance and insight is truly inspiring.👍
Hi Mark. Nice to see you. - Kevin D
Respect man. I'm glad you punched that guy and pulled him up because no one should be treated like that.
One of the best videos I have ever seen. I suffer from all the symptoms but I can smell properly. I was on FSH And I think LH or pregnyl for a few years. The cost was high but my wife was very cooperative. One daughter with IVF and the other one normal after one year. Thanks God. I also suffer from Bipolar Disorder. I take Sustanon 250 every two weeks. But still I suffer from fatigue. I will add more information later.
I never knew it had a name and I'm 57 now ! My pump worked and i have a 30year old daughter. Im so shocked that it has a name ! Thank you for talking about this ❤🏴🏴
So glad im 16 and already started treatment
Early diagnosis and treatment can really make a big difference to Kallmann syndrome patients. I was not diagnosed until I was 23 and I feel like I missed out on so much.
What a fantastic description of your life Mark. I had many similarities with you although you have emerged far, far better than I have.
I just want to say you are very brave...thanks for sharing..
Gracias por tu experiencia... Yo también padezco Kallmann.
A fantastic video Mark, well spoken and explained.
I never heard of this condition until today. I commend you on your journey of recovery! I have a sense of smell and hearing is fine, but i have very little body hair, no beard growth and a young voice. I wonder if I have this syndrome. I'm 42 and look 20 to most people. I feel your pain.
The overall name of the condition is hypogonadotropic hypogonadism (HH).
About half of the people with HH also have no sense of smell as well, and then the condtion is called Kallmann syndrome.
People with HH will have a normal sense of smell. People with this condition can look a lot younger than they should and have low testosterone levels. The key hormones to ask your doctor to check for alongside tesosterone levels would be levels of the hormones LH and FSH.
Ciao. Hai fatto gli accertamenti per capire se hai questa sindrome?
What a story! Thankyou for sharing this!.
Mark, you and I sound like we have the same condition matched to a "T". I am 54, and was born in 1965 and I know that I went through many of the things that you went through. Looking back, It is tough when you are in the 12th grade, and you have 7th graders bigger and taller than you were. I connected with a hormonal Endocrinologist when I was 15. Started taking growth shots when I was 17. Took more treatment when I was 20, but I broke out with tones of acne that it scared my skin in certain places. I did not seek full treatment till I was 27 and well out of college. But I was diagnosed with hypogonadism and hypothyroidism. Since 1992, I have been receiving continuous treatment. And now it has been 27 years since. I also do not smell things either.
1:56 that’s exactly what is do. That is literally exactly what I do. My sense of smell has been absent for as long as I could remember, like you I have noticed that my armpit hair hasn’t grown and I haven’t had a broken voice.
On my You Tube channel I have created a separate play list just for Kallmann syndrome / CHH videos. These will be patient made videos and any others I can find that directly relate to Kallmann syndrome / CHH.
Hi Neil, Thanks for posting this. This is a very interesting story. I'd like to hear more from Mark Saunders. My story is in some ways similar to Mark's, but it differs in some ways. I think the jell products are by far the best. Luckily, they are readily available in the US.
Hello I am 25 and was diagnosed officially this year. I lost my job and I live in a 3rd world country. Is there any way I can get help.
Thank you for sharing. I have KS myself.
So similar to me in terms of treatment - I'm so glad that the gels are available in the UK though, so sorry that they aren't in NZ. Those patches were a nuisance though - they kept falling off as I walked to work and I would spot them on the pavement when I walked back from work later in the day! LOL ... Interesting that you went to Loughborough Uni - I have moved to L'boro a couple of years ago! We may have the same endo at Leicester ...? Perhaps we can chat on Skype some time? my name there is dwsolo1
This is not my video, this is a video of a KS friend of mine talking about his experience.
If you want to learn more about Kallmann syndrome or ask a question in confidence you can e-mail:
kallmannsyndrome@gmail.com
Links:
www.ncbi.nlm.nih.gov/books/NBK1334
rarediseases.info.nih.gov/diseases/10771/kallmann-syndrome
I try to answer as many e-mails as I can.
I am a female with IHH. Same things during childhood - looking 10 years younger)) but maybe this is for the better in my 30s :D I also have a terrible gut disorder, was thinking if this is related to IHH...
My husband has Kallmann"s Syndrome. He was getting treatment in the UK but, after moving here to the States he discontinued treatment because of the expense. Unfortunately, we are not in the position to afford it.
Sorry to hear that. It is not easy being off treatment. I know some KS guys in the US use a compound testosterone gel which appears to cost between $30 to $40 per month. Not all pharmacies can supply it but it can be cheaper than using brand name medication as long as you have a valid prescription.
I do not know too much about getting medications in the US since I live in the UK but one of my US friends suggested this website for information on prescription assistance schemes.
healthfinder.gov/FindServices/SearchContext.aspx?topic=696
Thank you, I'll have a look. My hubby is from Essex and while still living in the UK there was no problem with acquiring his medication. Here in the States it has been a problem. Thanks again.
Do you have any children?
what I mean can your husband reproduce
Ive never went through puberty. I've visited three doctors and they prescribed me T and meds but none of them told me what was actually wrong with me. I definitely don't have Klinefelter syndrome because i had a test of my chromosomes which I do have 46. and I have my sense of smell. Do you have any idea what's my condition?
It is possible that you have the condition known as CHH - congenital hypogonadotropic hypogonadism. If you are on testosterone medication and your testicles have remained small, not increasing in size from childhood it can be another sign you have CHH.
If you have blood tests down the levels of two hormones are important. LH and FSH will be very low, or even zero if you have CHH.
You will have to ask your doctor to explain what your condition is and if these hormone levels have been checked.
plymouthlad38 Thank you so much. This helps me tremendously now that I can research and develop a better understanding. I'll be visiting a endocrinologist soon. Thank you and have a blessed day.
Fascinating story and super interesting video.
I have two questions.
1. What were your testosterone levels before treatment and what are your levels now?
2. You mentioned that without TRT you feel week and lethargic. Did you have periods of fatigue before treatment started or only after you already took testosterone for some time?
I posted the video on behalf of Mark. I am also a patient with Kallmann syndrome.
My testosterone level at the age of 22, before diagnosis and treatment, was 1.1 nmol/l (about 28 ng/dl if you are in America). When I am on Nebido treatment I am normally between 15 and 20 nmol/l (360 and 480 ng/dl) which seems to be a good level for me.
I went through University with this very low testosterone. I can not remember feeling tired or lethargic at the time. I was not particularly sporty but I can not remember any serious issues. I think the tiredness became more of an issue as I got older and started working 45 hour weeks. I would certainly notice the lack of testosterone then and my sleep patterns were affected.
Thank you
I don’t get it. Isn’t Kallman syndrome make you not go through puberty?
You have a deep adult voice. And you’re tall and broad. You look like a good healthy adult man.
So how do you have Kallman syndrome?
If you have Kallmann syndrome on go on testosterone therapy you gradually get most of the physical changes normally seen at puberty.
So over time you will have muscle growth, body hair growth, skin changes that make you look closer to your real age, voice will break. A guy with Kallmann syndrome when on the correct level of testosterone therapy will look like any other regular guy on outward appearance.
Testosterone therapy will not cure the anosmia, so they still will not be able to smell
Testosterone therapy will not induce fertility so it is not like it is a normal puberty, some parts of the body, not normally seen by most people will not change.
I have ks the only thing that worries me is that I won’t have biological kids
Fertility treatments (gonadotropin therapy) are available for KS patients. Unfortunately they can be expensive but they can be very effective for both males and females with Kallmann syndrome and CHH.
plymouthlad38 have you get anything private I can message you on I feel really uncomfortable talking about it on here
@@muhammadpatel4778 Send an e-mail to: kallmannsyndrome@gmail.com
What do u think about lions mane mushroom I read it’s able to grow brain cells
Is it possible for my husband to reach out to you please? He's 40 and just being diagnosed. I happened upon you and I feel like him having someone to talk with may be of tremendous help.
You can contact me anytime on: kallmannsyndrome@gmail.com
I posted the video, rather than Mark who is talking in the video. I am always happy to talk to fellow patients. We do have groups on Facebook where your husband can talk to fellow patients if he wishes to.
I’m 18 in July and look young for my age
Could you tell me when it was that you started losing your hair? Was it soon after you started taking testosterone?
is there any drawbacks on getting testosterone treatment for kallmanns as adult
Personally I think there are more drawbacks if you do NOT get testosterone therapy for Kallmann syndrome while an adult. While testosterone is not a vital hormone for life, such as insulin is, its absence can seriously affect the quality of life.
The major point would be low or absent testosterone will increase the risk of developing osteoporosis or osteopenia. Testosterone is required for bone strength.
Low testosterone levels can also lead to an increased risk of developing certain conditions like type II diabetes and metabolic syndrome.
Having low testosterone levels will also lead to low energy levels, sleep problems, low sex drive and increased fat production.
I have had periods where I have been off testosterone therapy but they never feel good and I always feel better once I am back on some form of therapy. It is important to get a balanced level, changes in testosterone level can produce mood swings which can be difficult to handle.
plymouthlad38 i was thinking of pubertal development and whether or not there is a reduction in pubertal development as a adult going through testosterone treatment after the teenage stage
Sorry, I see what you mean.
If you start testosterone therapy later in life, if diagnosed late, you will still get most of the changes seen at puberty with increased hair and muscle growth and with decreased fat distribution.
Penile growth is unlikely if treatment is started late, there may be a small amount of growth but probably not as much as would be the case if treatment was started as a teenager.
While on testosterone only therapy there will no increase in testicle size and no sperm production, regardless of the age treatment is started. However, with the correct gonadotropin therapy, testicle growth and sperm production can be achieved at any age. If there were undescended testicles at birth which was not corrected at a very early age this can reduce the chances of this form of treatment working but it can very effective in men with KS of all ages.
You are welcome to message me at any time. We have groups on Facebook you can contact me as well. I am always happy to talk to fellow patients. I was diagnosed myself at the age of 23.
There is a chance of penile growth but the later you start treatment, the less chance there is to get the growth you were destined to get. It varies a lot from patient to patient. I know some of my KS male friends who are quite content with their growth.
Once you have been on testosterone for a while you will begin to look older, with more hair growth but it can take a few months of treatment for the changes to start.
Do you have any penile growth after treatment?
In my own experience (I posted the video, I am not the person in the video), I did not get any penile growth after treatment but I started treatment late (23 years old).
I know younger patients who have started either gonadotropin therapy or testosterone therapy at a younger age who experienced growth. It can vary so much from patient to patient.
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..
It will remain but u will face othe factors of low testosterone like low energy , low labido , low energy depression etc
I'm also gonna start trt in few days i have some questions regarding it can I get you number
I have also kallamann syndrom
Treatment ka baad life ksi ha
@@prajjwaltamta556 ma treatment nahi le raha. . . 3 sal mane LSH Or FSH ke injection liye the per abi 5-6 sal se no treatment. .
What's his name?
This is a serious question, I believe I have this but after treatment, does your genitals grow
It does depend on your age and the type of treatment you are on.
Normal testosterone therapy will not make the testicles grow if you have Kallmann syndrome or CHH. If you start treatment as a teenager you can get some penile growth while on testosterone but it the amount of growth can be highly variable.
There is a type of treatment, known as gonadotropin therapy, which is a type of fertility treatment taken instead of testosterone therapy. On this therapy men with Kallmann syndrome or CHH can achieve testicle growth for as long as they are on this therapy, which helps in testosterone and sperm production. This type of treatment is normally very expensive.
saya penderita ks umur saya 53 tahun baru tau
Maaf pak.. apakah seoranng ks bisa punya keturunan..saya seperti mya juga ks klo di lihat dri gejala nga..usia 34
I might have this oof
Bryson Prete me too
How old are you ?
Brypleb i am 14 and i only got my testies bigger
I think i also have ks