Instagram posts on Kallmann syndrome

22 Oct

Written By Neil Smith

As part of a project to help #kallmannsyndrome patients learn more about their condition Andrew Dwyer of Boston College, USA and his team have been developing a new Kallmann syndrome / CHH information website for use as an information source for pati

On line Zoom patient meeting for Kallmann syndrome / CHH patients on Sunday 15th September.

12pm EST (5pm UK, 6pm Europe)

Hosted by Dr Andrew Dwyer, Boston College, USA.

#kallmannsyndrome #kallmann #hypogonadism #hypogonadotropichypogonadism #pu

I still find it a bit weird that #anosmia can be linked to not going through #puberty correctly.

I know a little more about olfactory neurones, GnRH neurones & migration through the cribiform plate now but as a teenager I had no chance of linkin

Searching for information on our condition is not always straight forward and our condition has been called by different names over the years.

The condition was first described in the in 1856 by a Spanish doctor called Aureliano Maestre de San Juan

I never actively chose to be a patient advocate and it is certainly not a journey I have done alone.

I am not going to mention names for privacy reasons but there have been other advocates who have helped along the way and are still doing work to he

Mini puberty is a time just after birth when there is a surge in reproductive hormones, most notably in males.

Males can have adult levels of LH. FSH and testosterone. This surge primes the testicles to allow for maximum reproductive capactity late

Early notification of patient meeting to be held at Boston College, USA.

Sun 10th November 2024.

Hosted by Dr Andrew Dwyer.

Further details and registration link to follow at a later date.

I was pleased to be able to present a poster at a recent endocrinology conference on my patient journey and the role patient advocates have in rare diseases.

Delayed puberty - normally self limiting but can also be caused by over production or unde

It was a useful experience to attend #endo2024 as a patient.

I managed to meet up with many of the #kallmannsyndrome specialists from various centres from around the world I have been in contact with over the years. I rarely get the chance to see th

kallmannkallmann syndromepubertyanosmiahypogonadotropichypogonadism

Survey for male KS / CHH patients on fertility treatments.

You Tube Video Kallmann syndrome - psychology research.