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Contents
Contents
Absent puberty - Not a late bloomer
Kallmann syndrome - absent or incomplete puberty - Introduction
Not a late bloomer - 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
Patient presentation 2019
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.
Patient made You Tube videos
You Tube videos
Patient presentation 2021
2019 On line survey of KS / CHH patients
Interviews with Dr Andrew Dwyer, Boston College
Kallmann syndrome photos
Kallmann syndrome Social media
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
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
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
Kallmann syndrome - absent or incomplete puberty - Introduction
Not a late bloomer - 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
Patient presentation 2019
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.
Patient made You Tube videos
You Tube videos
Patient presentation 2021
2019 On line survey of KS / CHH patients
Interviews with Dr Andrew Dwyer, Boston College
Kallmann syndrome photos
Kallmann syndrome Social media
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
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
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
Kallmann syndrome - absent or incomplete puberty - Introduction
Folder: My Kallmann syndrome story
Back
Not a late bloomer - 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
Patient presentation 2019
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: Social media
Back
Patient made You Tube videos
You Tube videos
Patient presentation 2021
2019 On line survey of KS / CHH patients
Interviews with Dr Andrew Dwyer, Boston College
Kallmann syndrome photos
Kallmann syndrome Social media
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: 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
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

Link to Facebook group for Kallmann syndrome patients:

Link to an alternative Facebook group for Kallmann syndrome patients:

Link to Tik Tok account on Kallmann syndrome:

Link to Instagram account on Kallmann syndrome:

Link to Reddit page on Kallmann syndrome:

Link to Facebook page on Kallmann syndrome:

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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