On line Zoom meeting for Kallmann syndrome / CHH patients.
Dr Andrew Dwyer of Boston College USA will be hosting an on line patient meeting on Saturday 12th June 2021 via Zoom.
The topic of this meeting will be “Psychological aspects of Kallmann syndrome / CHH including depression and anxiety.”
https://www.facebook.com/events/1636477733220159
Link to register for the meeting:
The psychological issues of having Kallmann syndrome are perhaps often overlooked in the treatment of Kallmann syndrome and CHH patients. Hormone replacement therapy can in a lot of cases help with the physical side of the condition but little attention is given to other aspects of the condition. Missing out on fundamental development stages such as puberty and adolescence can have a profound influence on a patient’s life.
Kallmann Syndrome - delayed or absent puberty 
So to register have to go through FB? I no longer use it desire to use social media. And even IF I did, I wouldn’t use FB. If zoom is vid and or audio conferencing, that rules me out. Am a complete recluse. Have severe anxieties and the mere thought of being seen or heard is no longer possible. It’s email, phone texts or snail mail for me.
That said, in my early 40’s, untreated, and sick of society. Been living a hikikomori state for the last 22 years. Willing to share my story of interested.
Hello,
You do not have to use Facebook at all. I try to put a notice on this site of all the Zoom meetings and on Instagram for those people who do not use Facebook. Zoom is a video & audio network but we do have people who attend the meetings without using the video and they can just listen to the meeting and watch the presentation. You do not have to use Facebook to use Zoom.
You do not even have to use your real name to enter the Zoom meeting or show a photo, you can just watch and listen. If you register for one meeting Andrew Dwyer will then e-mail you every time there is a new meeting.
You can watch some presentations on our You Tube channel if you wish.
If you wish to share your story you can post it here or I can post it on other sites and ask other people to contact you by e-mail if you wish. I think people would be interested in hearing your story.
We do have another discussion board on:
https://www.rareconnect.org/en/community/kallmann-syndrome
It can be a bit quiet there but at least it is an alternative to Facebook.
Hate typing on phone, it’s Thomas
I am 41 & I have not gone through the process of puberty, I have no hair on my leg, testicles, and I don’t seem to have a Adams apple? Plus my armpits have no hair and my face doesn’t have the ability to grow a beard etc etc I just don’t seem to be aging like everyone else, I have kept it a secret for a long time& now I have to tell someone who understands if you know what Imean. I am a physicist and I can do quantum mechanics and I have a iq of 176 I am diagnosed with high functioning autism