xxy conference, livingwithxxy, Klinefelter syndrome, xxy, 47xxy

XXY conference for Klinefelter syndrome

Looking back on the last year of my life. In June of 2017 I decided to go to my first XXY conference  put on by the non profit AXYS. This happens once every two years. The conference is about x and y variations including what I was born with which happens to be Klinefelter syndrome. I had known about these conferences since I was younger. I never had any interest in meeting others with my condition.  I think this was just because I was so busy with life trying to keep a job, friends, social life, school, family, girlfriends through the years that I never felt like there was enough time. Being 31 years old at the time, my mom came up to me and asked me if I wanted to go in April of 2017.  She said that I would learn something and I might find a way to help a few people. Little did I know that this conference would be life changing for me.  I said yes and went with a purely open-minded mentality, no judgment of who or what the XXY conference was about. The XXY conference location was in Denver, Colorado.  I had previously spent 5 years of my life living up in the mountains, and I always try and come back to Colorado once a year to visit my friends who still live in this beautiful state.  The conference was spread out over 3 days and was geared more to parents with young kids although there happened to be about 25 adults over the age of 16. It’s something I highly recommend looking into, saving money and making a serious effort to go.   After the XXY conference was over, I walked away with some new life long friends, a ton of ideas and so many unanswered questions. So I started teaching myself more about my XXY and Klinefelter syndrome than ever before. (I feel like I’m getting a medical degree) Most of my life I just did what my doctor said, did blood work when I needed to and lived life the way I always did. I have this fire in me wanting to know more, wanting to meet more people and understand why it’s talked about so negativity. Some of my questions were “why has there never been a study about what we are good at”. “Why are doctors telling pregnant mothers””your son won’t have a chance at life””. “Why is there no positive information about this” In September I made my first ever YouTube video and now I working on a series of videos to bring more light to our community. Hopefully inspiring others to do the same and open up about the positive side of life, turning the corner on the negativity and pessimistic views. Today’s the last day of 2017 and in 2018 I have decided to open a new chapter with a brand new website dedicated to purely positive information and about my life with xxy and others. I will post when it’s launched. XXY has now become my main focus for the next 6 months. I want to help build a community where people can meet and talk with others in their city or all over the world, keep raising awareness and reaching for the stars to show people that we are not just “hidden in plain sight” but that we are amazing and creative people. We XXY are the ones who have to make the change happen, standing up and educating those around us for a brighter future and a positive one.    Help Build a positive community and read my story Here Also check out my YouTube Here Ryan Bregante

5 thoughts on “XXY conference for Klinefelter syndrome

  1. Nice post! I’m impressed with all that you have done. As I’ve said before, you remind me of me when I just jumped into assisting with the community as soon as I was diagnosed.
    I, for one, am glad you are here to take the baton and run with it! I’m here to help and support your efforts in any way I can. Please feel free to call on me and keep up the great job you are doing.

  2. Keep pushing forward and reaching for the stars on your mission to make a more positive XXY community. You are a blessing to the worldwide community, and I am thankful to have the opportunity to assist you in this mission.

  3. As a mommy, I am so grateful for you and your efforts. I literally had zero resources until finding your instagram page and now we’ve seen an Endo and are traveling to Denver to see Dr Davis. You changed my and my son’s life, so thank you! i’m so excited to follow your journey and to have a role model for my kiddo as he gets older

  4. I was also born with klinefelter syndrome, and I was always a person with several health problems, hearing problems, kidney problems, I was diabetic, had hypoclesemia, had convusive crises, and I have high pressure glaucoma in the eyesight. I did all My mother always took care of my health. I have a folder, with all my documents of all the doctors, in which I was accompanied during my life. And who was suspicious that I had a syndrome was my doctor of Dr. Evelyn has always followed my treatment since she was very young. She told my mother that she takes me to a geneticist, for she had told my mother that; Mother (Gabriel) is a child with many health problems and I (Dr. Evelyn) suspect that her son has a syndrome. My poor mother was scared and she and I did not even know what that word meant.In short, my mother took me to a doctor with a specialization in genetics. Dr. Sueli and Dr. Sonia told my mother that I had a rare syndrome, they examined me and said that I had been diagnosed with xxy.To sum it up again, my childhood was a marvel. When I reached my teenage years it was a hell of a thing, I do not know Ryan Bregante if you went through the same problems as I did in my teens.Today I am 27 years old, and with the treatments I have overcome many symptoms of the klinifelter syndrome, I have never had hormone replacement because my doctor always told me that I had enough, and that if I did a hormonal treatment could have future problems.Nowadays I feel like an extremely happy person, because I have always been a very strong person.I have always been a person who is passionate about arts,today I am trained in performing arts, dubbing, acting, I am singer, dancer and writer, the disease never filled me with conquering my dreams, for I have always been a determined, persistent, persevering person and above all with faith in God in everything in my life.I’m Brazilian, I was recently in the month of April, to look for information on Youtube about klinefelter’s syndrome, and the first channel I found was your Ryan Bregante and I was curious and started watching your videos, and read comments about other people with xxy I was very interested because even though I’m from Brazil, I saw that there are other people with the same doubts in countries different from mine. And I was very happy because there are still things you talk about, and explains to people, things that I could not even imagine.I found this very important.That’s Ryan, it’s very difficult, Congratulations on devoting yourself to your life to help others xxy.

  5. hello Bryan, first of all I apologize for my bad English … I’m thrilled with your site and all the hope you bring. Two years ago when I discovered that my son (Caio, he is 4 years old) has SK I was desperate and at the same time relieved to discover so soon and give him the opportunity of a normal life; you show me that what I desire for him may be real, that he has autonomy in life and can choose his way as an ordinary person. I also hope to pass this information forward here in Brazil, we will follow you, accompany you and help you to make people understand the syndrome, Thank you!

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