Me:Just not quite yet

By Owen, Kallmann syndrome, United Kingdom, January 5, 2019

Me at 17 : A year and a half into treatment

At 16 my life changed.

I was diagnosed with a rare condition. The condition is called Kallmann syndrome and it's main symptom is not going through puberty. To be 16 and not go through puberty puts you at a huge disadvantage, not just physically but emotionally. Being behind all my classmates with them growing beards and moustaches and me not even getting stumble .

However Kallmann syndrome also has many other issues including: Cleft lip and cleft palate, osteoperosis, high chance of a stroke, dental issues and a smaller or completely missing sense of smell. On top of that issues like sexual maturity can leave you second guessing your sexual preferences and issues like temperature regulation leave you colder than many others. But the big issue for the few with Kallmann syndrome is the fact you have a VERY high chance of being infertile. A fact I recently had to come to terms with after I went through seemingly unsuccessful fertility treatment in preparation for the future.

However a strong support network, especially my mum has helped me so much. She has become my rock and it's so important for any person with a rare condition to have someone. My advice for anyone starting their journey with a rare condition/disease:

Keep your head up because through all the bad there will always be good!


Find others with Kallmann Syndrome on RareConnect, the online platform for people affected by rare diseases.


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