Saturday, November 05, 2011

Kallman's Syndrome Revisited

At the age of 55, I "came out" about my genetic condition, Kallman's Syndrome (sometimes spelled without the possessive). 

KS also is often paired with HH, which stands for Hypotropic Hypogonadotropism (a rare 7-syllable word), although KS has accompanying, sometimes very serious, conditions.  Mostly notably, we have anosmia, the inability to smell.  Some with KS also have osteoporosis, are taller than average (I'm taller than I'm supposed to be and taller than the average woman, but I don't consider myself tall), kidney failure, cleft palate, hearing loss, and mirror movement of the hands.  I only suffer from the HH and the lack of smell.

I have written at length on this blog about my journey with KS http://partsofspeaking.blogspot.com/2011/07/kallmans-syndrome-secret-best-kept.html and it has been one of my most popular links.  I have also joined two facebook groups of HH/KS patients and have learned a lot.  I have corresponded with a couple of them through email.  Here are my observations, having finally talked, at least electronically, with other persons with this disorder for the first time in my life. 

  • Think about that, folks.  I have never to my knowledge met anyone face-to-face with this syndrome, and perhaps never will.  I have never really been treated for it as what it is, only for the lack of hormones.  I doubt my gynecologists have ever really understood it (although one did mention the word to me, I had to do my own research, and thanks to the Internet, there actually is some available.)  I have never spoken to a psychologist about it.  I have only now begun to talk about it publicly.  So I have kept this big fat secret about a huge part of my life.  What does that say about me and my life?  It explains a lot--why I am so unrevealing about other things as well.  And I have a lot to reveal. One day I will publish my memoirs.
  • The failure to go through puberty has to have some effect on our brains and intellectual development.  I don't know if this has been studied.  I just know that I was a math whiz until I hit trigonometry and then none of it made sense, yet I could pick up foreign languages until my 20s.
  • It seems that the most vocal persons, the most active ones, who have KS, are in the UK.  Whether there are more of them there (no evidence to support that), whether they have better research and care for it, whether those with KS in the UK are just more vocal and activist and supportive of each other, I don't know.  On the Facebook message boards they didn't seem to think this is unusual.  I also spoke to someone from Italy and someone from Pakistan, so it is obviously not confined to Europeans.  
  • It is genetic.  My mother always thought something had happened to me in my infanthood to cause it. (I had an hemangioma above my navel that was "burned" off with Cobalt; my brother had the same problem, as did my nephew, so that must be genetic, too.)  Now I know it just is, it's just in my genetic structure, it's all the way through me, not just something that affected one part of me.  That's revealing also. Yet I didn't pass it on to my son, and I will hope that it doesn't lie dormant in him to pass on to  grandchild.  One mother-daughter pair on the Facebook page both had it; my goodness. 
  • It is much more common in males and I think it is much more difficult for them.
  • It causes some pretty severe psychic, social, and emotional pain for most of us.  Even once we are treated and our bodies start to do the hormonal things (like menstruate) that they are supposed to by adulthood, we struggle to find anyone who would be a spouse (or partner for some; not everyone shares my traditional views of marriage, then children, but that's not the issue here).  We appreciate our spouses just a little more, maybe.  
  • We struggle the most with infertility after a certain age.  I have been able to share with the others about this, what I went through.  How I could only breastfeed for four months because the pregnancy upshot of hormones was wearing off.  
  • It affects our sex lives.  It just does, in too many ways to count here.  Some painful stories there; I don't have one of them, and wouldn't say I did even if I did.  But the others I've talked with do, and it's perfectly understandable.  
  • I fear some of us have let the condition, disease, disorder, curse, whatever you want to call it, hold us back from a full life.  That would be my message here, and for those who don't know me, I'm going to show my hand here as a Christian.  Jesus said, I came to give life and to give it more abundantly.  That verse is often misunderstood and taken to mean crazy things, like we get more money if we follow Jesus (yeah, right!).  But I like to think that I have lived an abundant life, that I have taken advantage of what's been before me, more than less.  I am planning on starting a doctoral program next year at the age of 56!  It's something I don't want to go to my grave without having done.  But I also want to go to the mission field, serve humankind, write about ten or twelve more novels, have grandbabies, take care of my mom until she is 98 (the age my grandmother died), and train my pit bull to be a therapy dog (she's a long way from that).  I want to have friends, real friends, not Facebook ones.  
  • To those who have it, the females at least, once you pass menopause, other than fatigue, it doesn't matter! 
  • We laugh about how it feels to always be thought much younger than you are.  In your twenties, you look twelve.  In your forties, about thirty.  However, I'm not sure it works after middle-age.
As I have said before, I welcome talking with those who have this condition.  It has been very freeing to find someone who understands after all these years.

When I was younger, in child-bearing years, I had friends and friends of friends who were just a little out there in terms of the whole "have a bunch of babies-breastfeed-homeschool" world view.  Those people held me under bondage.  I remember a good friend telling me that one of her friends had asked why I only had one child.  Obviously, it was none of their business; I think this person had six children and thought it was a form of evangelism to have more.  I don't know.  I appreciate that my friend told them I had an infertility problem (and let me tell you, I've gotten some crazy advice on that score--one woman told me to use herbs!).  However, having an infertility problem and having KS are worlds apart; it's like the difference between being clumsy and having Parkinson's disease.  The worst part of KS is that no one gets that difference; they can't.  I called it the secret best kept in my first blog on it.  I don't want to keep it a secret, but I don't expect other people to understand.

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