Testosterone Replacement therapy livingwithxxy xxy kilnefelter syndrome

New Testosterone Replacement Therapy

In January of 2018 I was invited to speak in front of the FDA in Washington D.C about Testosterone Replacement Therapy. This was regarding two pharmaceutical companies who are still trying to get a pill form of Testosterone passed.  I find that this can be a benefit towards people born with Klinefelter syndrome that use Testosterone Replacement Therapy. A “safer” pill from its predecessors would offer an alternative option to current forms of Testosterone Replacement Therapy available.

I can’t even remember the last time I had to give a speech in front of a large crowd, probably high school speech class back in 10th grade which was 16 years ago.  Wow does time fly! I tend to not follow guidelines or enjoy reading from a piece of paper. So I decided I would write my speech in the airplane 1 day prior to speaking. Lots of people with Klinefelter syndrome 47xxy, and x and y variations lack executive functions. I know I fall short here but I try my best. Spelling, Reading, Writing, and grammar are by far my hardest.

I decided to just fly by the seat of my pants but my nervous got the best of me when I noticed over 100 extremely important people in the room.  My heart was racing over 130 bpm, I was pacing in the hallway 30 minutes prior trying to calm my nerves, take my heart of my throat and tell myself it’s a once in a lifetime opportunity. Talking about testosterone replacement therapy from my personal experience was life changing once the speech was over. 

The FDA gave us 5 minutes to talk which felt like an eternity while standing at the podium right in front of a largely shaped U table, all eyes on me! Well most of the eyes besides a few doctors and other FDA officials on their cell phones, Twitter, SnapChat and Instagram are highly addictive. (hahaha)

I was number 7 to speak about how I believed this new form of testosterone replacement therapy  would help change the lives of millions of people with Klinefelter syndrome, 47xxy and all other x and y chromosome variations.  When I say millions I mean it, not everyone is diagnosed but there are millions of us out there. So here it goes, that little speech I wrote on a Southwest flight 36,000 feet in the air.

 

Hello, I am not representing any company today only myself, although Clarus paid for my travels and expenses to get here. My name is Ryan bregante, I am 32 years old from San Diego, California. I was born with something called Klinefelter syndrome also known as 47xxy. Unlike most men in this room my body does not make testosterone. Ever since I started puberty at the age of 13 I have been using injection Testosterone.

Now that I am older I wouldn’t want the next generations of kids with low Testosterone to go thru this cumbersome process. What 13 year old enjoys shots weekly? Let alone, adults.

So Every 7 days for me to live a more normal life. I stab myself with a big needle that causes physical pain, scar tissue and a roller coaster of emotions.

Ive tried other forms of testosterone replacement therapy including the gels and patches. I live a super active and adventurous life where these processes become messy and are a burden.

As technology moves forward so does innovation, but I feel that the forms of Testosterone replacement therapy we have available today are like experiencing dial up internet and aol.com all over again. America can be the forefront on leading this innovation and the rest of the world will follow. In the generations to come, this step forward will allow people to push the boundaries further, just like we are doing today.

I look at this new concept like diabetics who got upgraded to the insulin pump. It became life changing for type 1s all over the world to just live a more normal life.

In closing, I truly believe that this idea can not only change my life, but 100,000s if not millions all over the world. Thank you

If you would like to watch my youtube video on this top please take a moment and click FDA Thoughts

Ryan

2 thoughts on “New Testosterone Replacement Therapy

  1. Hello,
    I m writing from France ( West part, Vannes) . My son nearly 9 has KL. I know it since birth. He has also ADHD and we fight together for his education at school. He only has school in the morning while the other children morning and afternoons. He is so cute, very shy ( can’t speak in classroom) and doesn’t have a good image of him. I try to make no differences between him and his older brother (11). He will have next his first appointment at the hospital for a treatment of testosterone. I’ve heard that patch are not commercialized in France, so Îm looking for further information about replacement therapy. The situation for KL is really bad in France!
    May be can you help me , what can I propose to my son so they he feels better and make him stronger at school, and what is the best treatment today?
    Thanks very much in forward… for your answer
    Gil

  2. Great to read your story. My son is 47xxy. I would like to meet with you sometime. We are in NW FL. Do you think your travels will bring you near here anytime soon?

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