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First, I would like to tell you a bit about my life, mainly before the diagnosis. I was born in March of 1970 by C-section. I was a happy baby, at least indicated by my parents and other family members. I was also been told that I behaved well and did what I was told. However, it always seemed throughout my early childhood, teens and even somewhat now that I was very shy, reserved and had trouble making friends among my peers. My temper always got the best of me and I would fly into rages for no apparent reason. One minute I’d be very calm, the next I would be picking fights and throwing things
My parents knew when I was very young, that there was something about me that wasn’t right. But they could never figure it out until the KS diagnosis came through last year (February 1996).
Throughout life I saw many psychologists, psychiatrists, therapists and doctors to try to determine what my problems were with regards to school, social problems and severe mood changes. There were no substantial explanations that they found while testing me for a variety of things. The tests occurred roughly between 1975-1985. KS was not even considered because it was so rare and not known about. Even now, KS is rare in thinking and diagnosed cases (although I am working to change that). Getting back to the psychologists, etc..., their only diagnosis was learning disabilities (LD’s) which with some people, can be a symptom of KS. My learning disabilities created many problems during my schooling years. My disabilities consist of reading comprehension, abstract thinking, understanding of non-visual materials, word retrieval, some slight memory retrieval and the taking of standardized tests. These learning disabilities that I have mentioned hampered my abilities during all of my schooling years until I learned to compensate for them. I can honestly say that if I hadn’t learned to compensate for my disabilities, I wouldn’t be where I am today today. My approach took years to perfect. In fact, every time I get faced with a new situation that I don’t know how to handle or figure out, I go back to my compensation modes and strategies. For years, I had enormous amounts of tutoring and extra help sessions. I hated them.
In the seventh grade, I was told by a psychologist that I was stupid and lazy and I’d be lucky if I graduated high school. I would probably live at home for the rest of my life and I would never amount to anything. After this for the next almost five years, I did basically what he said. I’m still not sure what his motives were for saying what he said. I believe though, that I have succeeded because I was told that I would fail.
Then, after barely graduating high school, I started out at a local community college in Maryland. I decided at that point, to stop the tutoring sessions and figure things out on my own. The support services were there in college if I needed or wanted them. I worked very hard for three years while at the community college and I received an Associates Degree in Business Administration in May 1992. I never once sought special help during my three years there. After graduating, I transferred to a small liberal arts college in New Hampshire to finish up my Bachelor of Science degree in Business Administration. During my second year, supposedly my last year in undergraduate, I decided to spend an extra year to complete a second Bachelor of Science degree this one in Sports Management. I spent three years at this college, graduated with two Bachelor of Science degrees and never once sought special help nor did I let on about my learning disabilities to anyone. The reason I never discussed my learning disabilities was because I took pride in doing the work by myself and not being treated as if I was special. I still do not discuss my learning disabilities because I’ve learned to work around them and compensate for them and still don’t want to be treated differently than anyone else. My grades at this college were excellent. I never had a semester below a 3.0. One of my personal goals was to graduate cum laude. I failed to achieve this goal but achieved other personal goals by making dean’s list and national dean’s list for the first time ever. So much for the 680 combined on my SAT’s. I had thought directly after college of pursuing graduate studies and had applied and been accepted into a graduate program at Springfield College, but decided it wasn’t the right time. I will be pursuing graduate studies in the near future. All of this happened before being diagnosed with Klinefelter Syndrome.
I moved to this area to start a job in the computer field as a software engineer for an Internet based company. Granted, I do no t have an educational background in this field, but experience wise, I have been using some type of computer for 17 years and have learned everything I have needed to know on my own. Incidentally, many KS’ers excel with computer skills and knowledge. It can make it easier to learn. I know from personal experience. As I mentioned, there are still times when I have to learn a new way of compensating to deal with a new situation. I’ll be the first one to tell you that it is not easy. It is very tough, a lot of trial and error. A lot of times I’d be running face first into a brick wall (figuratively, of course), but eventually, over time, I would figure it out and be very proud of myself. I wouldn’t be nearly as successful today if I hadn’t learned to do this on my own. This has taken a serious drive, but I now know and have the confidence in myself that I can accomplish anything I set my mind to. If I take the time to figure it out and learn to process it in a different way.
To find out my KS diagnosis, I had gone to my general physician for a physical. It was there that he noticed that my testes were smaller than they should be and sent me for blood work. A month later, after the lab results and karyotype had come back, the results were conclusive. It showed KS 47XXY.
I’ll tell you a little bit about Boston Area/Northeast Regional Klinefelter Syndrome Support Group I started. After seeing the symptoms of KS and what effects they might have - I found it described me perfectly. After getting over the initial shock, and dealing with the denial, depression, sadness and anger, I decided that there could be things much worse in life and I decided to take a positive approach.
When I moved to the Boston area in July 1996, I found that there wasn’t a support group here for KS’ers, like myself or for parents of KS sons. I decided to start a KS group in this area for three reasons. The first was for support for myself. The second reason, and most important, was to help other KS’ers deal with it and not have to feel alone, to help families of younger KS kids deal with it and to help families who are just finding out prior to the birth of their son. The third reason was to have a place for KS’ers and families to connect. These are the ways I felt I could positively help with Klinefelter Syndrome.
What I found after deciding to start the group, was the outpouring of need for a group like this in the Northeast. The response has been incredible.
I know that Klinefelter Syndrome isn’t talked about or known about among many professionals. The best way to help myself deal with KS, is to help other people deal with it and to spread the word about KS.
My goals with KS are to educate, educate, and educate. Getting the word across, making myself and the group known is what I continually try to do. My goals are also to help the people just finding out and helping them to not feel alone and to cope with KS.
There are several different kinds of treatment available for KS. They are all for hormone replacement therapy (HRT), and the types include injections, 2 types of patches and oral medication. I give myself a testosterone injection once every two weeks intermuscular (IM) in the thigh. I find the treatment to be good and have found that it has made me feel like a different person. This is a good thing. My learning and thought process has become stronger. I am a much more outgoing person and I have become more of a leader. Granted, not all of this is due to the increased testosterone level, some is from a new confidence level and some is from maturing as a person.
The usual age to start the treatment is around 11-13 years old. The later that one starts hormone replacement therapy, the more problems that can exist. However, being the difficulty in diagnosing Klinefelter Syndrome, as well as the expense involved in having a Karyotype and/or Chromosomal Analysis done, some people, like myself, did not find out until later in life and did not start HRT until later in life. For me, it would have been great if I could have found out about KS and started on testosterone about 10 years earlier, but that’s just the way it went. Plus, there is no guarantee that the symptoms I described earlier would have helped even with the onset of a normal testosterone level. The currently available research is not conclusive that any of the learning or behavioral problems would have been any different if I had been treated earlier.
I feel that parents who are finding out prior to the birth of their son or parents of infants or young children are very lucky. When I talk to parents, the first thing I tell them is how lucky they are to find out now. They ask me why and I tell them that there is so much that they can do to help their child have a great life. Some parents do not find out until their son is much older and are not able to help them lead the best life possible nor are they able to understand why they had certain problems growing up. This was my case, my parents never knew why I acted so terrible while I was growing up. Those of you finding out now - can help. You can make a difference.
Parents typically ask me what is the right time to tell their son about KS and its problems. This is very hard for me to answer since I was diagnosed later in life. My best advice is from my heart and the way I felt growing up. It is to tell them that their son probably already knows that he is different and that something is wrong. I knew from probably as early as five years old that something was different about myself. I had a feeling in my gut that I tried to let go of, but it always followed me around.
I expect that parents and adult KS’ers are looking for initially is some compassion and sympathy, two things that were not given to me after my diagnosis. I expect they’ll also be looking for confirmation and some, especially the parents awaiting the birth of their son, will be trying to decide if they should abort the pregnancy. Currently, the abort rate for parents finding out prenatally is much higher than it should be. It doesn’t need to be this way and shouldn’t be. KS isn’t something that should be dreaded, look at what I’ve described about myself. If any parents are reading this and are trying to decide what to do because your son who will be born has KS, I urge you to get the correct facts and information before making a decision. In my opinion though, in 1997, I believe that aborting a KS baby is wrong.
I am here, willing to talk to anyone, both one-on-one and in a group situation about KS and my life living with it. As you can, I am not shy about having and dealing with KS. I have lived a very good life and will continue to, regardless of the fact that I was diagnosed with KS. I have had most all of the symptoms at some time in my life and I’ve gotten through and done well. I’ve done what I needed to do to succeed. I never wanted help after high school because I always believed I could succeed on my own. I just consider myself someone who has survived, gotten by and care about helping others survive KS.
Please contact me through my e-mail address at: sschwarz13@juno.com if you wish to discuss Klinefelter Syndrome or the Boston Area/Northeast Regional Klinefelter Syndrome Support Group. I can also be reached by telephone at 1-888-718-9309. If you are in the Northeastern U.S. or any other region, for that matter, and would like to attend the meetings and/or would like to get additional information, you can contact me through the above e-mail address or the toll-free hotline.
