Patient Comments: Klinefelter Syndrome - Symptoms

What were the symptoms of your Klinefelter syndrome?

Comment from: frustrated, 45-54 Male (Patient) Published: March 31

I was diagnosed with Klinefelter syndrome in 2004 and did not believe what they said and got 3 opinions to diagnosis that I had it and I am 50 years old now. I have lung scarring with no cures or no healing and cannot be reversed. They think it just activated 1 year ago, it is called bronchiectasis. I had a heart catheterization just recently and that was fine, thank goodness. I now have liver lesions and/or cysts and a pancreatic cyst that may be related to Klinefelter. Doctors think I have some kind of serious liver disease called hepatic outflow obstruction which is a blockage in the liver veins flowing of blood and they say the correction is surgery. I was on testosterone therapy but from it acquired breast nodules and that the therapy was stopped which did not bother me at all, the side effects from testosterone therapy are major with liver cancer being one of them. I never had problems in that area anyway. I think that you have to be your own patient advocate and if a doctor cannot figure it out you go to someone else.

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Comment from: xxy ge, 65-74 Male (Patient) Published: March 07

My diagnosis was confirmed at age 38 as Klinefelter syndrome and I have had a variety of testosterone replacement therapies and am now using a gel applied daily. As a youth I was tall and slim but with little stamina for intensive sport; cross country running would leave me cold. At age 8 I had had mumps which left me partially deaf and the delayed puberty was blamed on mumps too. Fortunately the syndrome did not affect my language abilities and I read, write and speak English, German and French and have an IQ above 135. At 67 I am morbidly obese, suffer sleep apnea, and elevated blood pressure, and all teeth gone, have diabetes 2, am about to learn how haywire my thyroid has gone and have indications of osteoporosis.

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Comment from: PAPA, 65-74 Male (Patient) Published: October 08

I was diagnosed with Klinefelter syndrome at age 28. Growing up was pretty tough as the condition was unheard of. As a teenager I developed breast tissue and was teased which forced me to give up a lot of sport because of the embarrassment in the showers. Not knowing what it was my doctor and parents thought it was fat and so I was made to exercise to get rid of it. Fortunately my sex drive wasn't affected and I had a very active sex life. At age 25 I had cosmetic surgery to remove the breast tissue meanwhile my body started to change from tall and skinny to tall and fat and at age 66 I am morbidly obese. Although I have had mainly physical impairments I am quite grateful that my mind wasn't affected. I have held many interesting jobs and have been a self-employed insurance broker for 29 years. The extra x chromosome I believe also gave me a wider range of singing notes enabling me to sing quite well. I am sterile but it hasn't all been bad. Life is what you make it.

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Comment from: AcEd21, 19-24 Male (Patient) Published: February 08

I am a normal 20 year old guy with klinefelters syndrome. I had no troubles growing up with large breasts or lack of facial hair, but regardless I still have it. I live an active sex life and still use protection even though I am "sterile". I think anyone with this disease should not be ashamed of it.

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Comment from: wife of xxy, 55-64 Male (Caregiver) Published: April 08

My husband and I have been married for more than 40. When we married I had two young children, whom he raised as his own. After we were married for a few years, he was told he was sterile (possibly caused by mumps) so we did artificial insemination (AI) and I gave birth to a beautiful, healthy son. Several years later, my husband was diagnosed with Klinefelter. He has problems with sleep apnea, arthritis, and weight control. He is the sweetest man ever – and nobody has ever known about the AI – so he has raised three beautiful, intelligent young people. We have eight wonderful grandchildren – so there are ways around every obstacle. Just keep looking!

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Klinefelter Syndrome - Treatments Question: What was the treatment for your Klinefelter syndrome?
Klinefelter Syndrome - Physical Development Question: If you or someone you know has Klinefelter syndrome, describe challenges in physical development.

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