Hypogonadotropic Hypogonadism - Delayed or absent puberty

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Not a "late bloomer" blog

Title page

News

FAQ

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 ?

Information shorts

1. What does HH mean ?

2. What is Kallmann syndrome ?

3. What causes Kallmann syndrome / HH ?

4. How is Kallmann syndrome / HH diagnosed ?

5. What is hypogonadism ?

6. How is Kallmann syndrome / HH treated ?

7. Fertility treatments for Kallmann syndrome / HH

2019 On-line survey of Kallmann syndrome & CHH patients

2019 On line survey of KS / CHH patients

Past patient meeting presentations

Patient presentation 2019

Patient presentation 2021

Interviews with Dr Andrew Dwyer, Boston College

Treatment

Male HRT in delayed puberty and Kallmann syndrome.

Female HRT

Male Fertility

Female Fertility

2015 Guidelines

Testosterone treatments.

hCG (human chorionic gonadotropin) therapy.

Diagnosis

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.

Photos

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

Links

MGH Boston

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

Medical Papers

Published papers

2024

2023

2022

2021

2020

2019

2018

2017

2016

2015

2014

2012

2011

2010

2006

2005

2002

1989

1986

1982

Contact Us

Not a "late bloomer" blog

Title page

News

FAQ

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 ?

Information shorts

1. What does HH mean ?

2. What is Kallmann syndrome ?

3. What causes Kallmann syndrome / HH ?

4. How is Kallmann syndrome / HH diagnosed ?

5. What is hypogonadism ?

6. How is Kallmann syndrome / HH treated ?

7. Fertility treatments for Kallmann syndrome / HH

2019 On-line survey of Kallmann syndrome & CHH patients

2019 On line survey of KS / CHH patients

Past patient meeting presentations

Patient presentation 2019

Patient presentation 2021

Interviews with Dr Andrew Dwyer, Boston College

Treatment

Male HRT in delayed puberty and Kallmann syndrome.

Female HRT

Male Fertility

Female Fertility

2015 Guidelines

Testosterone treatments.

hCG (human chorionic gonadotropin) therapy.

Diagnosis

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.

Photos

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

Links

MGH Boston

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

Medical Papers

Published papers

2024

2023

2022

2021

2020

2019

2018

2017

2016

2015

2014

2012

2011

2010

2006

2005

2002

1989

1986

1982

Contact Us

Not a "late bloomer" blog

Title page

News

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 ?

Folder: Information shorts

Back

1. What does HH mean ?

2. What is Kallmann syndrome ?

3. What causes Kallmann syndrome / HH ?

4. How is Kallmann syndrome / HH diagnosed ?

5. What is hypogonadism ?

6. How is Kallmann syndrome / HH treated ?

7. Fertility treatments for Kallmann syndrome / HH

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

Folder: Treatment

Back

Male HRT in delayed puberty and Kallmann syndrome.

Testosterone treatments.

hCG (human chorionic gonadotropin) therapy.

Folder: Diagnosis

Back

Diagnosis of Kallmann syndrome / CHH

You Tube video on Kallmann syndrome

Video on Frequently Asked Questions

Patient information sheets.

Photos

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

Folder: Links

Back

MGH Boston

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

Back

Ovitrelle. hCG. 6,000 IU pre-filled pen. (Copy)

My initial blood test results on first diagnosis. (Copy)

Gonadotropin treatment for fertility.png

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.

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