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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

 

Penile growth in response to human chorionic gonadotropin (hCG) treatment in patients with idiopathic hypogonadotropic hypogonadism.


Isolated GnRH deficiency: A disease model serving as a unique prism into the systems biology of the GnRH neuronal network.


Review: Genetic counseling for isolated GnRH deficiency


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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