Hypogonadotropic Hypogonadism - Delayed or absent puberty

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Contents

Absent puberty - 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

2015 Guidelines

Patient information sheets.

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

Male HRT in delayed puberty and Kallmann syndrome.

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

2019 On line survey of KS / CHH patients

Patient presentation 2019

Patient presentation 2021

Interviews with Dr Andrew Dwyer, Boston College

Information Booklet on Kallmann syndrome

Medscape article on Kallmann syndrome and CHH

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 public Facebook group.

Rare Disease UK

Patient made You Tube videos

You Tube videos

Published papers

Glossary of terms

Contents

Absent puberty - 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

2015 Guidelines

Patient information sheets.

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

Male HRT in delayed puberty and Kallmann syndrome.

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

2019 On line survey of KS / CHH patients

Patient presentation 2019

Patient presentation 2021

Interviews with Dr Andrew Dwyer, Boston College

Information Booklet on Kallmann syndrome

Medscape article on Kallmann syndrome and CHH

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 public Facebook group.

Rare Disease UK

Patient made You Tube videos

You Tube videos

Published papers

Glossary of terms

Absent puberty - Not a late bloomer

Folder: My Kallmann syndrome story

My Kallmann syndrome story

Initial blood test results

Patient advocate patient presentation

My treatments for Kallmann syndrome

Folder: Diagnosis

Diagnosis of Kallmann syndrome / CHH

You Tube video on Kallmann syndrome

Video on Frequently Asked Questions

Associated symptoms

2015 Guidelines

Patient information sheets.

Folder: 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

Folder: Treatment

Male HRT in delayed puberty and Kallmann syndrome.

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

Folder: 2019 On-line survey of Kallmann syndrome & CHH patients

2019 On line survey of KS / CHH patients

Folder: Past patient meeting presentations

Patient presentation 2019

Patient presentation 2021

Interviews with Dr Andrew Dwyer, Boston College

Information Booklet on Kallmann syndrome

Medscape article on Kallmann syndrome and CHH

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 public Facebook group.

Rare Disease UK

Patient made You Tube videos

You Tube videos

Folder: Medical Papers

Published papers

Glossary of terms

Infographic titled 'Delayed diagnosis of Kallmann syndrome: Journey from patient to advocate,' with sections on background, clinical case, advocacy journey, products, and key points, featuring colorful icons and a winding road graphic.

Poster presentation given at Endocrine Conference in Boston in 2024. Patient advocate journey.

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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