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Contents
Contents
Absent puberty - Not a late bloomer
Introduction
My Kallmann syndrome story
Initial blood test results
Patient advocate patient presentation
My treatments for Kallmann syndrome
Diagnosis of Kallmann syndrome / CHH
You Tube video on Kallmann syndrome
Video on Frequently Asked Questions
Associated symptoms
Blood Tests
MRI
DEXA
2015 Guidelines
Patient information sheets.
Genetics
Genetics of Kallmann syndrome / CHH
Migration of GnRH releasing neurones
Medical paper on genetic testing in Kallmann syndrome
Medical paper on genetics of Kallmann syndrome / CHH
UK genetic screening programme for Kallmann syndrome / CHH
Male HRT in delayed puberty and Kallmann syndrome.
Female HRT
Male Fertility
Female Fertility
2015 Guidelines
Testosterone treatments.
hCG (human chorionic gonadotropin) therapy.
Q1.What is Kallmann syndrome ?
Q2.When was Kallmann syndrome first discovered ?
Q3.What does an endocrinologist do ?
Q3a. What causes Kallmann Syndrome ?
Q4 What are hormones ?
Q5 What and where are the hypothalamus and pituitary gland ?
Q6 What happens during normal puberty ?
Q7. How does having Kallmann syndrome affect puberty ?
Q8 Can patients with Kallmann syndrome become fertile ?
Q9. Can you have Kallmann syndrome and a normal sense of smell ?
Q10. What causes the lack of sense of smell (anosmia) ?
Q11. What is the link between anosmia and failed puberty ?
Q12. Do patients with Kallmann syndrome grow to normal height ?
Q13. Do all patients with Kallmann syndrome develop osteoporosis ?
Q14. What other symptoms are associated with Kallmann syndrome ?
Q15. Can Kallmann syndrome be "caught" from somebody else.
Q16 What are "genes" and how do they relate to Kallmann syndrome ?
Q17. How is Kallmann syndrome diagnosed ?
Q18. How do I contact other people with Kallmann syndrome ?
Not a "late bloomer" blog
News
2019 On line survey of KS / CHH patients
Patient presentation 2019
Patient presentation 2021
Interviews with Dr Andrew Dwyer, Boston College
Photos
MGH Boston
Information Booklet on Kallmann syndrome
You Tube Channel for videos on Kallmann syndrome / CHH
COST / European network for GnRH deficiency.
Pituitary Foundation - UK
Rare Connect Organisation
NIH Article on Kallmann syndrome / CHH
Genetic Alliance UK
Kallmann syndrome Wikipedia page
Kallmann syndrome WordPress Blog
NORD page on Kallmann syndrome
BMJ Patient Journey article on Kallmann syndrome
Doctors TV show on Kallmann syndrome.
Kallmann Syndrome Facebook Page
Rare Disease UK
My Reproductive Health
Patient made You Tube videos
You Tube videos
Published papers on Kallmann syndrome
2025
2024
2023
2022
2021
2020
2019
2018
2017
2016
2015
2014
2012
2011
2010
2006
2005
2002
1989
1986
1982
Glossary of terms
Contact Us
Contents
Contents
Absent puberty - Not a late bloomer
Introduction
My Kallmann syndrome story
Initial blood test results
Patient advocate patient presentation
My treatments for Kallmann syndrome
Diagnosis of Kallmann syndrome / CHH
You Tube video on Kallmann syndrome
Video on Frequently Asked Questions
Associated symptoms
Blood Tests
MRI
DEXA
2015 Guidelines
Patient information sheets.
Genetics
Genetics of Kallmann syndrome / CHH
Migration of GnRH releasing neurones
Medical paper on genetic testing in Kallmann syndrome
Medical paper on genetics of Kallmann syndrome / CHH
UK genetic screening programme for Kallmann syndrome / CHH
Male HRT in delayed puberty and Kallmann syndrome.
Female HRT
Male Fertility
Female Fertility
2015 Guidelines
Testosterone treatments.
hCG (human chorionic gonadotropin) therapy.
Q1.What is Kallmann syndrome ?
Q2.When was Kallmann syndrome first discovered ?
Q3.What does an endocrinologist do ?
Q3a. What causes Kallmann Syndrome ?
Q4 What are hormones ?
Q5 What and where are the hypothalamus and pituitary gland ?
Q6 What happens during normal puberty ?
Q7. How does having Kallmann syndrome affect puberty ?
Q8 Can patients with Kallmann syndrome become fertile ?
Q9. Can you have Kallmann syndrome and a normal sense of smell ?
Q10. What causes the lack of sense of smell (anosmia) ?
Q11. What is the link between anosmia and failed puberty ?
Q12. Do patients with Kallmann syndrome grow to normal height ?
Q13. Do all patients with Kallmann syndrome develop osteoporosis ?
Q14. What other symptoms are associated with Kallmann syndrome ?
Q15. Can Kallmann syndrome be "caught" from somebody else.
Q16 What are "genes" and how do they relate to Kallmann syndrome ?
Q17. How is Kallmann syndrome diagnosed ?
Q18. How do I contact other people with Kallmann syndrome ?
Not a "late bloomer" blog
News
2019 On line survey of KS / CHH patients
Patient presentation 2019
Patient presentation 2021
Interviews with Dr Andrew Dwyer, Boston College
Photos
MGH Boston
Information Booklet on Kallmann syndrome
You Tube Channel for videos on Kallmann syndrome / CHH
COST / European network for GnRH deficiency.
Pituitary Foundation - UK
Rare Connect Organisation
NIH Article on Kallmann syndrome / CHH
Genetic Alliance UK
Kallmann syndrome Wikipedia page
Kallmann syndrome WordPress Blog
NORD page on Kallmann syndrome
BMJ Patient Journey article on Kallmann syndrome
Doctors TV show on Kallmann syndrome.
Kallmann Syndrome Facebook Page
Rare Disease UK
My Reproductive Health
Patient made You Tube videos
You Tube videos
Published papers on Kallmann syndrome
2025
2024
2023
2022
2021
2020
2019
2018
2017
2016
2015
2014
2012
2011
2010
2006
2005
2002
1989
1986
1982
Glossary of terms
Contact Us
Absent puberty - Not a late bloomer
Introduction
Folder: My Kallmann syndrome story
Back
My Kallmann syndrome story
Initial blood test results
Patient advocate patient presentation
My treatments for Kallmann syndrome
Folder: Diagnosis
Back
Diagnosis of Kallmann syndrome / CHH
You Tube video on Kallmann syndrome
Video on Frequently Asked Questions
Associated symptoms
Blood Tests
MRI
DEXA
2015 Guidelines
Patient information sheets.
Folder: Genetics
Back
Genetics
Genetics of Kallmann syndrome / CHH
Migration of GnRH releasing neurones
Medical paper on genetic testing in Kallmann syndrome
Medical paper on genetics of Kallmann syndrome / CHH
UK genetic screening programme for Kallmann syndrome / CHH
Folder: Treatment
Back
Male HRT in delayed puberty and Kallmann syndrome.
Female HRT
Male Fertility
Female Fertility
2015 Guidelines
Testosterone treatments.
hCG (human chorionic gonadotropin) therapy.
Folder: FAQ
Back
Q1.What is Kallmann syndrome ?
Q2.When was Kallmann syndrome first discovered ?
Q3.What does an endocrinologist do ?
Q3a. What causes Kallmann Syndrome ?
Q4 What are hormones ?
Q5 What and where are the hypothalamus and pituitary gland ?
Q6 What happens during normal puberty ?
Q7. How does having Kallmann syndrome affect puberty ?
Q8 Can patients with Kallmann syndrome become fertile ?
Q9. Can you have Kallmann syndrome and a normal sense of smell ?
Q10. What causes the lack of sense of smell (anosmia) ?
Q11. What is the link between anosmia and failed puberty ?
Q12. Do patients with Kallmann syndrome grow to normal height ?
Q13. Do all patients with Kallmann syndrome develop osteoporosis ?
Q14. What other symptoms are associated with Kallmann syndrome ?
Q15. Can Kallmann syndrome be "caught" from somebody else.
Q16 What are "genes" and how do they relate to Kallmann syndrome ?
Q17. How is Kallmann syndrome diagnosed ?
Q18. How do I contact other people with Kallmann syndrome ?
Not a "late bloomer" blog
News
Folder: 2019 On-line survey of Kallmann syndrome & CHH patients
Back
2019 On line survey of KS / CHH patients
Folder: Past patient meeting presentations
Back
Patient presentation 2019
Patient presentation 2021
Interviews with Dr Andrew Dwyer, Boston College
Photos
Folder: Links
Back
MGH Boston
Information Booklet on Kallmann syndrome
You Tube Channel for videos on Kallmann syndrome / CHH
COST / European network for GnRH deficiency.
Pituitary Foundation - UK
Rare Connect Organisation
NIH Article on Kallmann syndrome / CHH
Genetic Alliance UK
Kallmann syndrome Wikipedia page
Kallmann syndrome WordPress Blog
NORD page on Kallmann syndrome
BMJ Patient Journey article on Kallmann syndrome
Doctors TV show on Kallmann syndrome.
Kallmann Syndrome Facebook Page
Rare Disease UK
My Reproductive Health
Patient made You Tube videos
You Tube videos
Folder: Medical Papers
Back
Published papers on Kallmann syndrome
2025
2024
2023
2022
2021
2020
2019
2018
2017
2016
2015
2014
2012
2011
2010
2006
2005
2002
1989
1986
1982
Glossary of terms
Contact Us
Gonadotropin therapy injections as part of a clinical trial since I have Kallmann syndrome. View fullsize
Gonadotropin therapy injections as part of a clinical trial since I have Kallmann syndrome. View fullsize
Gonadotropin therapy injections as part of a clinical trial since I have Kallmann syndrome. View fullsize
Gonadotropin therapy injections as part of a clinical trial since I have Kallmann syndrome. View fullsize
Two syringes with colored caps and two empty plastic vials on a black textured surface. View fullsize
Boxes and a vial of Pregnyl, a medication containing chorionic gonadotropin, used for intramuscular or subcutaneous injection. View fullsize
Boxes of Chorionic Gonadotropin injections and Pregnyl solution, stored in a refrigerator. View fullsize
Six boxes of Chorionic Gonadotropin (hCG) medication and one box of Pregnyl, all stored in a large clear plastic bag on a desk. The boxes have instructions and labeling on them, with red and black text, and are placed against a dark background. View fullsize
Boxes of Chorionic Gonadotrophin and Pregnyl injection medication on a table. View fullsize
Stacked boxes of Pregnyl, a medication used for injections, on a shelf. View fullsize
Two boxes of Pregnyl 1500 I.U. medication, each with a syringe and a small vial, and a sealed package of sterile needles. View fullsize
Two boxes of Pregnyl 1500 I.U. powder for injection with syringes and needles. View fullsize
Three vials labeled 'Pregnyl 1500' for injection, with two syringes, one with a green cap and one with an orange cap, on a wooden surface. View fullsize
A clear plastic syringe with a needle, lying on a wooden surface. View fullsize
Kallmann syndrome treatment.  (Copy) View fullsize
My photo at 18 years old. (Copy) View fullsize
A young man with glasses wearing an orange shirt and a plaid jacket, standing outdoors in an open plaza with a large, modern dome-shaped structure and grassy area in the background. View fullsize
A collage of nine photos featuring a young man at various ages, with different appearances and settings, including outdoor and indoor environments, some with animals, smiling, and taking selfies. View fullsize
Different treatment methods (Copy) View fullsize
Ovitrelle. hCG. 6,000 IU pre-filled pen. (Copy) View fullsize
My post on Imgur (Copy) View fullsize
My initial blood test results on first diagnosis.  (Copy) View fullsize
Screenshots showing low testosterone and sex hormone levels from a health app, with test results and suggested actions. View fullsize
Text explaining that SquareSpace has an AI for text generation describing Kallmann syndrome, its symptoms, causes, and treatments. View fullsize
A bottle of Testogel testosterone gel next to its box, with information about testosterone levels and health risks of low testosterone. View fullsize
A bottle of Testogel testosterone gel next to its packaging box with informational text about testosterone levels and treatment effects. View fullsize
Slide about Kallmann syndrome with titled header in blue, and bulleted information explaining the condition and its effects, occurrence, and treatment. View fullsize
Screenshot showing low testosterone and serum sex hormone binding globulin levels, with recommendations to increase daily gel dose and consider using hCG, alongside user health app navigation menu. View fullsize
A presentation slide discussing optimizing pubertal induction regimens to maximize breast and uterine development in a 17-year-old with CHH, including data on hormone adjustments and uterine growth over six months. View fullsize
Slide with medical research data on boys with congenital hypothyroidism and related conditions, including statistics and references, displayed on a screen at a conference. View fullsize
Diagram showing hormones and regulation of Kallmann's syndrome, including hypothalamus, pituitary gland, GnrH, LH, FSH, testes, ovaries, sperm, egg cells, and effects on muscle, genitalia, breast development, pubic and axillary hair. View fullsize
Diagram showing hormones involved in normal puberty, including the hypothalamus, pituitary gland, GnRH, LH, FSH, and their effects on testes and ovaries, leading to testosterone and estrogen production, which cause physical changes like muscle growth View fullsize
Diagram of the hypothalamic-pituitary-gonadal axis showing the hypothalamus releasing hormones, stimulating the pituitary gland to release hormones that affect the testes and ovaries, regulating fertility and secondary sexual characteristics. View fullsize
Diagram showing the hypothalamus and pituitary gland inside the brain with a magnified view of the pituitary gland detailing the key components: hypothalamus, pituitary stalk, pituitary gland, and olfactory bulb. View fullsize
A man with glasses and a beard, smiling, wearing a red shirt that reads 'Kallmann Syndrome Warrior'. View fullsize
Scatter plot comparing age of women and men diagnosed with a condition, shows women diagnosed at median age 18 years, men at median age 18 years, with data points spread across ages 0 to 50. View fullsize
Slide titled 'Goals of Treatment' with two sections: one showing two human figures representing looking like peers with second sex characteristics, and a list of sex steroids like testosterone and estradiol; the other showing a sperm icon labeled 'fe View fullsize
Diagram showing hormonal process of fertility treatment with gonadotropins, including hypothalamus, pituitary, and gonads, with related hormones and a syringe and vial representing injection treatment. View fullsize
Diagram explaining that sex steroids lead to no fertility and showing sources and types of testosterone, estradiol, and progesterone, with images of related medications and delivery methods. View fullsize
Distribution graph of pubertal timing showing a bell curve with most individuals around the average age at puberty, and 2.5% of individuals at both early and late extremes, with labels indicating percentages and age at puberty. View fullsize
Man standing in front of an academic conference poster about delayed diagnosis of Kallmann syndrome, featuring a road graphic and sections on background, clinical case, advocacy journey, products, and references. View fullsize
Poster titled 'Delayed diagnosis of Kallmann syndrome: Journey from patient to advocate' with sections on background, clinical case, advocacy journey, products, and key points, featuring a road graphic with location markers, logos, and contact inform View fullsize
A man standing in front of a conference poster presentation about delayed diagnosis of Kallmann syndrome, at an indoor event. He is wearing glasses, a dark blue shirt, and has a name badge around his neck. View fullsize
Man with glasses and conference badge standing next to scientific research poster at academic conference. View fullsize
Gonadotropin therapy injections as part of a clinical trial since I have Kallmann syndrome.
Gonadotropin therapy injections as part of a clinical trial since I have Kallmann syndrome.
Gonadotropin therapy injections as part of a clinical trial since I have Kallmann syndrome.
Gonadotropin therapy injections as part of a clinical trial since I have Kallmann syndrome.
Two syringes with colored caps and two empty plastic vials on a black textured surface.
Boxes and a vial of Pregnyl, a medication containing chorionic gonadotropin, used for intramuscular or subcutaneous injection.
Boxes of Chorionic Gonadotropin injections and Pregnyl solution, stored in a refrigerator.
Six boxes of Chorionic Gonadotropin (hCG) medication and one box of Pregnyl, all stored in a large clear plastic bag on a desk. The boxes have instructions and labeling on them, with red and black text, and are placed against a dark background.
Boxes of Chorionic Gonadotrophin and Pregnyl injection medication on a table.
Stacked boxes of Pregnyl, a medication used for injections, on a shelf.
Two boxes of Pregnyl 1500 I.U. medication, each with a syringe and a small vial, and a sealed package of sterile needles.
Two boxes of Pregnyl 1500 I.U. powder for injection with syringes and needles.
Three vials labeled 'Pregnyl 1500' for injection, with two syringes, one with a green cap and one with an orange cap, on a wooden surface.
A clear plastic syringe with a needle, lying on a wooden surface.
Kallmann syndrome treatment.  (Copy)
My photo at 18 years old. (Copy)
A young man with glasses wearing an orange shirt and a plaid jacket, standing outdoors in an open plaza with a large, modern dome-shaped structure and grassy area in the background.
A collage of nine photos featuring a young man at various ages, with different appearances and settings, including outdoor and indoor environments, some with animals, smiling, and taking selfies.
Different treatment methods (Copy)
Ovitrelle. hCG. 6,000 IU pre-filled pen. (Copy)
My post on Imgur (Copy)
My initial blood test results on first diagnosis.  (Copy)
Screenshots showing low testosterone and sex hormone levels from a health app, with test results and suggested actions.
Text explaining that SquareSpace has an AI for text generation describing Kallmann syndrome, its symptoms, causes, and treatments.
A bottle of Testogel testosterone gel next to its box, with information about testosterone levels and health risks of low testosterone.
A bottle of Testogel testosterone gel next to its packaging box with informational text about testosterone levels and treatment effects.
Slide about Kallmann syndrome with titled header in blue, and bulleted information explaining the condition and its effects, occurrence, and treatment.
Screenshot showing low testosterone and serum sex hormone binding globulin levels, with recommendations to increase daily gel dose and consider using hCG, alongside user health app navigation menu.
A presentation slide discussing optimizing pubertal induction regimens to maximize breast and uterine development in a 17-year-old with CHH, including data on hormone adjustments and uterine growth over six months.
Slide with medical research data on boys with congenital hypothyroidism and related conditions, including statistics and references, displayed on a screen at a conference.
Diagram showing hormones and regulation of Kallmann's syndrome, including hypothalamus, pituitary gland, GnrH, LH, FSH, testes, ovaries, sperm, egg cells, and effects on muscle, genitalia, breast development, pubic and axillary hair.
Diagram showing hormones involved in normal puberty, including the hypothalamus, pituitary gland, GnRH, LH, FSH, and their effects on testes and ovaries, leading to testosterone and estrogen production, which cause physical changes like muscle growth
Diagram of the hypothalamic-pituitary-gonadal axis showing the hypothalamus releasing hormones, stimulating the pituitary gland to release hormones that affect the testes and ovaries, regulating fertility and secondary sexual characteristics.
Diagram showing the hypothalamus and pituitary gland inside the brain with a magnified view of the pituitary gland detailing the key components: hypothalamus, pituitary stalk, pituitary gland, and olfactory bulb.
A man with glasses and a beard, smiling, wearing a red shirt that reads 'Kallmann Syndrome Warrior'.
Scatter plot comparing age of women and men diagnosed with a condition, shows women diagnosed at median age 18 years, men at median age 18 years, with data points spread across ages 0 to 50.
Slide titled 'Goals of Treatment' with two sections: one showing two human figures representing looking like peers with second sex characteristics, and a list of sex steroids like testosterone and estradiol; the other showing a sperm icon labeled 'fe
Diagram showing hormonal process of fertility treatment with gonadotropins, including hypothalamus, pituitary, and gonads, with related hormones and a syringe and vial representing injection treatment.
Diagram explaining that sex steroids lead to no fertility and showing sources and types of testosterone, estradiol, and progesterone, with images of related medications and delivery methods.
Distribution graph of pubertal timing showing a bell curve with most individuals around the average age at puberty, and 2.5% of individuals at both early and late extremes, with labels indicating percentages and age at puberty.
Man standing in front of an academic conference poster about delayed diagnosis of Kallmann syndrome, featuring a road graphic and sections on background, clinical case, advocacy journey, products, and references.
Poster titled 'Delayed diagnosis of Kallmann syndrome: Journey from patient to advocate' with sections on background, clinical case, advocacy journey, products, and key points, featuring a road graphic with location markers, logos, and contact inform
A man standing in front of a conference poster presentation about delayed diagnosis of Kallmann syndrome, at an indoor event. He is wearing glasses, a dark blue shirt, and has a name badge around his neck.
Man with glasses and conference badge standing next to scientific research poster at academic conference.

Medical Disclaimer: This website does not provide medical advice

This is a patient made website to help fellow patients with a rare condition.

It is not intended to be a substitute for professional medical advice, diagnosis or treatment.

Always seek the advice of a qualified health professional when it comes to diagnosis and treatment.

Glossary of terms   About

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