Delayed puberty cover page.
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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 ?
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.
Treatment
Male HRT in delayed puberty and Kallmann syndrome.
Female HRT
Male Fertility
Female Fertility
2015 Guidelines
Testosterone treatments.
hCG (human chorionic gonadotropin) therapy.
Photos
Genetics
Genetics
Migration of GnRH releasing neurones
Medical paper on genetic testing in Kallmann syndrome
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
Medical Papers
Published papers
2017
2016
2015
2014
2012
2011
2010
2006
2005
2002
1989
1986
1982
2018
2019
Contact Us

Kallmann syndrome & CHH

Delayed puberty cover page.
Home 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 ?
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.
Treatment
Male HRT in delayed puberty and Kallmann syndrome.
Female HRT
Male Fertility
Female Fertility
2015 Guidelines
Testosterone treatments.
hCG (human chorionic gonadotropin) therapy.
Photos
Genetics
Genetics
Migration of GnRH releasing neurones
Medical paper on genetic testing in Kallmann syndrome
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
Medical Papers
Published papers
2017
2016
2015
2014
2012
2011
2010
2006
2005
2002
1989
1986
1982
2018
2019
Contact Us
Neil Smith
16 September 2018

Survey results for Kallmann syndrome / CHH patients.

Neil Smith
16 September 2018

I created a series of online anonymous surveys for patients with Kallmann syndrome / CHH in the Facebook patient groups. These are the results of the surveys:

Survey 1. General Questions

Survey 2. Extra symptoms

Survey 3. Body image, sex and sexuality

Survey 4. Depression and emotional aspects

Newer PostClinical trial for Kallmann syndrome / CHH patients in UK.
Older PostPatient meeting in Boston, USA. 17th November 2018.
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About
About this website
What is Kallmann syndrome or congenital hypogonadotropic hypogonadism
Contacting other patients
Patient Information sheets.
Finding a KS specialist.
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