Thursday, December 18, 2014

Letters to Anne Landers

Minimize

Published on April 12, 1989

Dear Ann Landers:

Our 8-year-old son has Klinefelter syndrome. This is a chromosonal condition that affects only boys. The male children are born with 47 chromosomes instead of 46. These males are sterile, they have enlarged breasts, trouble with speech and language, and a myriad of other problems.

My husband and I have talked to many people in the medical profession. We did not learn much from them, but I don’t fault the doctors. Limited information is available for many of the chromosome abnormalities.

This condition, though rarely spoken of, affects one in 400 males. Parents of children with Klinefelter’s hesitate to tell family and friends because of the stigma. I tried to locate a support group but there doesn’t seem to be any. This is where you come in, Ann.

There must be hundreds of other parents who are looking for someone with whom they might share their feelings about this problem. Please urge them to send their names and addresses to me. I will make a list, state by state, of the males who have this syndrome, their parents and friends; and perhaps we can get together or exchange letters. If they would include a self-addressed, stamped envelope it would help keep the cost down.

You may think it odd that I choose to remain anonymous, but no one knows that our son has this problem. We don’t want anyone to know until the boy is old enough to comprehend what it is all about. Just sign me - Melissa, Mother of an X-tra Special Boy in Torrance.


Dear Readers: If anyone is interested in contacting other families who are dealing with this syndrome, please write to Melissa at (current address below). And don’t forget to enclose a self-addressed, stamped envelope.


Published on May 31, 1991

Dear Readers:

Klinefelter Syndrome is a chromosomal condition that affects only boys. These male children are born with 47 chromosomes instead of 46. They are sterile and have enlarged breasts, trouble with speech and language, and many other problems. This condition affects one in 400 male infants.

The following letter arrived recently and it really made my day:

Dear Ann:

Two years have gone by since I wrote to you about my son who has Klinefelter syndrome. Your willingness to print my letter has brought about profound changes not only in my life, but in the lives of those who responded.

The organization my husband and I founded has made an impact on many people and created a stir in the medical community. We are receiving referrals directly from doctors and genetic clinics in the United States, Canada and England.

We received over 1,000 responses to the initial letter printed in your column and we continue to receive letters from physicians, nurses, geneticists, psychologists and teachers who clipped your column and filed it away for reference. We now have a mailing list of more than 600 people who have Klinefelter syndrome or whose children have it.

Thanks to you, the help people can get today is infinitely better than what I was able to get from the medical community. I don’t mean to downgrade the medical profession, Ann. They did what they could. But after the diagnosis has been made, there is a tremendous need for practical information that physicians cannot provide. Support groups help fill that void.

Since I started networking, I have been sought out by medical professionals in several cities. I spoke to medical students at UCLA last year and represented California at a national conference in Washington on peer support. What a rare opportunity to make a difference in the lives of people who have nowhere to go. All this came about because you chose to print my letter about a disease that most people had never heard of. I love you for that.

Our group addresses the special needs of all males with chromosomal abnormalities, not only those with Klinefelter syndrome. Because there are so many significant similarities between the chromosomal variations, we want to put as many families in touch with one another as we can.

Our new address is: Klinefelter Syndrome and Associates, (current address below). If your readers would like to write to us, please ask them to send a self-addressed, stamped envelope. Also, a small donation to help cover costs would be greatly appreciated.

Thank you again for all your support, Ann. The human language doesn’t contain the words that I need to let you how how grateful I am.

Mother of An X-tra Special Son


  
Copyright 2014 by AXYS