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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 16/03/2025

Going to restart using Nebido (testosterone undecanoate) Going to take it every 8 weeks. Hopefully it should give a slightly higher and more stable testosterone level. #kallmann #hypogonadism #hypogonadotropic #testosterone #hormonereplacementtherapy #nebido #undecanoate #puberty #latebloomer

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 08/03/2025

We are creating a channel on You Tube where I will be asking a Kallmann medical expert some frequently asked questions on #Kallmann syndrome and #Hypogonadotropic Hypogonadism. We aim to produce a series of 3 - 5 minute videos to help raise awareness of the condition. youtu.be/QDfpA8NsoFY?...

youtu.be

KS / CHH. FAQ. Video 1. What is puberty ?

YouTube video by plymouthlad38

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Reposted by @kallmann-syndrome.bsky.social

National Organization for Rare Disorders (NORD) @nordrare.bsky.social · 18/02/2025

Behind every face is a unique and powerful story. This #RareDiseaseDay, read the stories behind the faces on our #FacesOfRare wall and add your own photo celebrating yourself or a loved one, living or in memory, here: bit.ly/4g6TEJa #ShowYourStripes #RareDisease

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 25/02/2025

Endocrinology appointment today. I am going to switch treatment from testosterone gel back the Nebido injection (testosterone undecanoate). Starting with a 8 week injection interval. #kallmannsyndrome #kallmann #puberty #infertility #anosmia #latebloomer #hormonereplacementtherapy #testosterone

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 22/02/2025

There are patient groups for Kallmann syndrome / CHH on Reddit and Facebook. Message from team of researchers from the University of Cambridge. A 15 min study on diversity and mental health in people with Kallmann syndrome #kallmann #puberty #raredisease www.reddit.com/r/kallmann_s...

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 16/02/2025

nyaspubs.onlinelibrary.wiley.com/share/H6CMMN... Kallmann syndrome / hypogonadotropic hypogonadism affects normal puberty and fertility in both males & females. Fertility treatments are available in the form of gonadotropin therapy. #kallmann #hypogonadotropic #infertility #puberty #gonadotropin

nyaspubs.onlinelibrary.wiley.com

Current landscape of fertility induction in males with congenital hypogonadotropic hypogonadism

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 16/02/2025

www.ncbi.nlm.nih.gov/books/NBK1334/ I have always found this to be a very helpful review on Kallmann syndrome / hypogonadotropic hypogonadism. GnRH deficiency is probably a more accurate description of the condition that affects puberty and fertility. #kallmannsyndrome #puberty #anosmia

ncbi.nlm.nih.gov

Isolated Gonadotropin-Releasing Hormone (GnRH) Deficiency

Isolated gonadotropin-releasing hormone (GnRH) deficiency (IGD) is characterized by inappropriately low serum concentrations of the gonadotropins LH (luteinizing hormone) and FSH (follicle-stimulating...

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 02/02/2025

I was diagnosed with #kallmannsyndrome when I was 23 years old, after being misdiagnosed as being a "late bloomer". This is one of the first You Tube videos I created, 15 years ago. youtu.be/NdugznakBGo?... #puberty #kallmann #hypogonadotropic #infertility #anosmia

youtu.be

Kallmann Syndrome - basic introduction.

YouTube video by plymouthlad38

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 02/02/2025

#RareDiseaseDay2025 is on 28th Feb. A video made 8 years ago for Genetic Alliance UK. #Kallmannsyndrome is a rare genetic endocrine condition that affects puberty and fertility. Patients are often mis diagnosed as "late bloomers". youtu.be/K3hSC6t2T1U?...

youtu.be

Neil's Story

YouTube video by Genetic Alliance UK

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 19/01/2025

youtube.com/shorts/9Po8L... #Kallmann syndrome is a rare genetic hormone condition that affects puberty and fertility. Patients are often misdiagnosed as "late bloomers" or "late developers". It is not the same condition as late puberty. #rarediseaseday #patientadvocacy #puberty #kallmann

youtube.com

Rare Disease Day. #kallmann #puberty #hypogonadism #raredisease #rarediseaseawareness

YouTube video by plymouthlad38

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 15/12/2024

Switching to Bluesky I think. I am patient advocate for #Kallmann syndrome. I post information about my rare endocrine condition in the hope to raise awareness and share information. It is a condition that affects puberty and fertility. It is not the same condition as delayed puberty.

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 15/12/2024

The condition is not the same as being a "late bloomer" or a "late developer". Patients with this condition would require life long hormone replacement therapy to replace the hormones normally produced after #puberty and specialised treatment known as #gonadotropin therapy if fertility is desired.

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 15/12/2024

#Kallmann syndrome is a rare hormonal condition affecting #puberty and fertility. It affects both males and females but is more often diagnosed in males. Kallmann syndrome is specifically associated with having no sense of smell from birth - #anosmia

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 15/12/2024

#Kallmann syndrome is a form of a condition called #hypogonadotropic hypogonadism (HH). There is a failure in the production of hormones that control puberty and fertility. It is not the same condition as delayed puberty or being a "late bloomer".

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kallmann-syndrome.bsky.social @kallmann-syndrome.bsky.social · 15/12/2024

I have #Kallmann syndrome. I post on social media about my condition to help to try raise awareness for this rare endocrine condition that affects #puberty and #fertility. Kallmann syndrome has the additional symptom of a lack of sense of smell - #anosmia.

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