Kallmann syndrome update. Jan 2022.
There is an on line patient meeting planned for Sat Jan 15th at 2pm EST / 6pm UK time. The meeting will be hosted by Dr Andrew Dwyer of Boston College, USA. The meeting will include a presentation by Dr Dwyer, a chance to ask questions and some updates on upcoming projects that could benefit patients.
Link to the meeting on Google.
There have been a couple of recent medical papers published on the use of the Kisspeptin test for diagnosing Kallmann syndrome / CHH. The idea is that the use of the protein Kisspeptin rather than the standard GnRH stimulation test can help doctors more easily distinguish between a case of Kallmann syndrome / CHH and a case of delayed puberty which would correct with or without treatment.
Earlier diagnosis and treatment of Kallmann syndrome / CHH, especially in teenagers can help with both the physical symptoms and probably more importantly, the psychological issues than can occur with the condition.
This post was made by a member of one of the Facebook KS groups. I thought it was worth sharing here as well:
2019 CHANGED ME-I was always an ordinary child like everyone else, I never had medical procedures that are more serious than tooth extraction and I never had serious diseases. I was healthy. However, one thing was wrong. I was 18 years old, and although 175 cm tall, I didn’t have any signs that puberty had started. I went to the endocrinologist for the first time in 2019, at the age of 18, and learned that unfortunately I am not one of the lucky late bloomers. I have a condition called Kallman Syndrome. By 2019 I was healthy, normal guy, and in 2019 I became a patient with a rare condition over night. I am starting to get informed about the condition and I am becoming more and more aware of my reality.Starting hCG+hMG therapy. That is how 2019 changed me.
2020 BROKE ME-I’m finishing high school, and I didn’t even get a chance to have a normal high school life because of KS and everything that comes with it. I lost a lot of friends that I never wanted to lose. I’ll never be a teenager. I missed the opportunity. Maybe there was a period in my life when I was 13-19, but it’s not enough to say that you were a teenager at one point in your life. I never was that and I will never be. I’m enrolling in faculty.
2021 OPENED MY EYES- hCG failed to help me produce testosterone… However, I began to realize that people do not have a bad opinion of me as I thought they did. I am beginning to learn that they respect and love me much more than I actually thought. I made good friendships with people from faculty and gained great respect from colleagues from faculty, as a testosterone deficient person . Every day I am more and more free from my traumas from my teenage days. I find out that I am as valuable as everyone else. Meanwhile, I am switching to testosterone. The last stage towards my complete transformation.Physical changes incoming, also mental and emotional ones that no one ever talks about,but they should. I may not have been a teenager, but improper development can be overcome with the right people around you. Having the body of a child at 20 is awful, but gaining respect from people around you with such body is not an impossible mission. A normal life is more than possible. EVEN WITHOUT TESTICLE ENLARGEMENT! A PERSON WITH KS CAN LIVE NORMAL LIFE!
2022-I’M COMING BACK-I’m coming back.Traumas from youth are a difficult enemy to overcome. And the worst are the ones that only you know how terrible and difficult they are to bear. Having KS is awful. KS patient is always in a dilemma what is worse, KS itself or the fact that no one will never trully understand you.But a normal life is possible. It is only necessary to go through these 4 phases. That is our development. That is how our development should be, that is what we are. We just need to find a way to live in accordance with that. I wish everyone a happy New Year, you may live with a rare condition, but you can live a normal life if you work hard enough. I wish you all the best!
Kallmann Syndrome - delayed or absent puberty 