xxy research

Be the CHANGE XXY Research

Hey how are you doing today.  I am reaching out to you, yes you reading this.  If you are over the age of 18 and you are born with some type of x and y variation. There are some amazing ways to get involved on the xxy research side.  Since I found out at 9 years old I have never attended a study until recently signing up for the one I am posting about. It’s time I get involved on a deeper level it is time to give back and help the medical field learn more about people who are being born with Klinefelter syndrome, XXY and the rest of the x and y variations.  

I do understand that many of us are afraid regarding xxy research.  Maybe it’s the feeling of “I don’t want to be a lab rat” or “I don’t trust our government”  or even the “I have never done this before and the anxiety we all have might take control” Whatever the reason might be let’s now look at the positive side of what xxy research programs can do for all of us and the generations to come.   I personally am attending this study below in August of 2018 and I am really looking forward to it.

The positive about getting involved is that we help the medical community better understand how these extra chromosomes happen during conceiving.  To help create more options for Testosterone Replacement Therapy. To better educate doctors and the medical field on how to diagnose and treat. Helping the education, schools, teachers and special education understand these rare conditions.  Bringing the diagnoses to a higher number, the current is 35% find out in their lifetime and 65% will never know. We get to learn more about our own bodies and our own conditions, helping us throughout life. If more people find out earlier on about their condition and diagnosis I believe more people will donate, more people will open up and the community will grow at a faster rate.  Thank you for taking the time to read this. Below is all of the information you will need.

XXY Guys and Parents of XXY kids. 18+ not available for people outside of the USA. If you have kids younger you can still call and show them that you are interested, as they will call you when new studies are available So maybe one day they do something for under 18. There is a study going on at the National Institute of Health in Bethesda, MD. They are doing a thorough exam with the use of MIR technology of the Brain, Chest and Abdomen. Test also include ears, eyes, endocrine, auditory procession, genetic counseling and a whole lot more.

They cover all transportation, lodging and food, you also get care and support from doctors at the NIH and they work with your current doctors. Attached is the Phone and reference number you will need. They are open from 9am to 4pm east coast time. 1-800-411-1222 reference #12-Hg-0181.  NIH Website Link

Ryan Bregante

10 thoughts on “Be the CHANGE XXY Research

  1. Hello. I am the parent of a 13 yr old young man with KS and the rare variance of 48 xxyyy. We would be very interested in a study if there is ever one under the age of 18 yr old. Thank you

  2. I would love to be part of the XXY Research I’m 47 years young & was born with 47xxy I have had a tremor since a very young age and as I get older the tremors are getting stronger it would be good to find out if the tremors are a part of 47xxy or something else going on in my body I have been tested for parkinson’s it looks like parkinsons but none of the medications for parkinson’s is working they think it is a part of 47xxy but they don’t know enough about Klinefelter syndrome to say that it is or not coming from it.

    1. Ηi Jason,
      I’m Iraklis from Greece (my email to reply to me: ikapatselos@yahoo.com)
      Im 37 yrs & I also have tremors (but mostly when Im stressed) I also have syringomyelia so maybe (the tremor) its from there….
      I would like to talk with you, our syndrome & so as to see how we live with it

  3. Hi Ryan,

    Too bad its only 4 USA. My case may be a lot more complicated, as together with 47 XXY, I also have Mobitz type I & progressing to type II, syringomyelia (which I found @ 2016), 2 herniaes @ the back & 3 herniae @ neck area, vertigo & many other, all of which some may directly be connected to 47XXY, but most doctors here in Greece arent so sure

    Is there anything similar to Europe as well & if (probably) where 2 look for?
    thanks

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