Wednesday, July 27, 2011

Kallman's Syndrome: The Secret Best Kept


I went to my cardiologist yesterday.  Every year I have to wear a Holter monitor for a day because of a heart ablation I had in 2007.  If you don’t know what a Holter monitor is, it’s a 24-hour mobile, wires-hanging-off-your-body EKG. 

The nurse practitioner saw me, (not the doctor, which is ok because his voice puts me to sleep).  She was very sweet.  She asked me if I was still taking Estradiol and Progesterin.  “No,” I said. “I’ve totally gone off those.  I was on them for a very long time and I wanted to be sure to stop.”
What I didn’t tell her is how long I actually had taken those hormones.  37 years.  I started with HRT when I was 17 because I have Kallman’s Syndrome. 

You may never meet a person who has this condition.  It only affects 1 in 10,000 people (or 1 in 86,000, according to one source) so that’s quite a range and far more males have it than females (as do most negative things).  So, being female, I am quite an oddity, one in 100,000 maybe.  And even if you do meet one, you might not suspect it and he or she will probably never mention it to you.  You will think it strange that the person says he or she has no sense of smell, and the person may look younger than his/her age.

Earlier on this blog I got after people using the term “coming out of the closet” because they do not know the origin of that phrase.  It comes from a time when gay men were assumed to wear women’s clothes—they were hiding in the closet trying on those clothes.    But I am coming out of the closet and admitting that I have Kallman’s Syndrome.

How do I know?  My gynecologist, who was also an infertility specialist, told me 30 years ago.  He asked me if I could smell, and I said no, I had almost no concept of what smell is even like.  He knew because he took me off my hormones for a while and tested my LH and FSH levels.  They were about as low as they could be, less than one-tenth the normal  level.  I think the normal level on the FSH was supposed to be 25 and mine was 2.5.  I was glad to get back on my hormones, though.  They were a lifeline to some sort of normalcy.  Being in your twenties and having menopausal symptoms is no fun.  Neither is being in your fifties.

Essentially, I never went through puberty.  I was 17, so my mother took me to a doctor back home in Maryland who put me on hormones, Premarin and Provera, which I took for years.  I left for college shortly after that, having my first cycle 600 miles away from home.  Slowly over the years I started to look more like a woman, except I was usually taken to be ten years younger than my age (not a bad thing).  I lived my life pretty normally except that I knew I would probably not have a child. 

In the last few years, in an attempt to write my memoirs, I have started to research Kallman’s more.  My main concern before now was that my son would get it, since it is caused by a recessive gene.  He did not; he’s quite normal.  I also used to fear he would be autistic because it and related conditions seem to run in my family.  He isn’t, nor does he have the mood swings and addictions in my husband’s family.  He is very blessed considering the genetic cocktail he’s been force-fed.  My other concern was HRT’s connection to cancer and heart disease.  I have had more mammograms than most women my age; so far, so good.

In researching Kallman’s, I found the following: 

“The features of Kallmann syndrome vary, even among affected people in the same family. Additional signs and symptoms can include a failure of one kidney to develop (unilateral renal agenesis), a cleft lip with or without an opening in the roof of the mouth (a cleft palate), abnormal eye movements, hearing loss, and abnormalities of tooth development. Some affected individuals have a condition called bimanual synkinesis, in which the movements of one hand are mirrored by the other hand. Bimanual synkinesis can make it difficult to do tasks that require the hands to move separately, such as playing a musical instrument.”   http://ghr.nlm.nih.gov/condition/kallmann-syndrome

So that’s why I could never get the hang of playing the piano, despite lessons!  I simply can’t get my right hand to do something different from my right.  (Then how come I can type?)  I do have a weirdly shaped mouth and crooked teeth (that piece of skin under the nose and behind the lip is very long).  However, my hearing is very acute, my kidneys are super, and while I am very nearsighted, I don’t think my eyes move abnormally.  I’m really quite healthy, except for the normal old age stuff. 

Sorry—I got a little snarky there.  I am so used to all those things, even the lack of smell, that I don’t mourn the loss of them.  I consider myself so incredibly blessed—mostly because I did have a child—that all those other quasi-symptoms seems small (although I have to admit a non-functioning kidney would not be a quasi-symptom, nor would a cleft palate). 
Now, in terms of the child, it went like this:  I took Perganol injections.  It makes a woman produce lots of eggs, something I could never do naturally.  This is how we get Octomoms.  Except that I had a very wise doctor who wanted to avoid multiple pregnancies and law suits, so he made sure eight eggs would not be fertilized.  He wasn’t even crazy about twins, although I thought, at the time, that twins would be cool and would save money—two for the price of one. 
I had Perganol injections in Fall of 1987, and they didn’t work; I had them in March of 1988 and they did, and I had my son in December, four days before my own thirty-third birthday.   When he was two and two-and-a-half, I went through the procedure again, but neither time was it successful.   My dream of a sibling for my son never materialized, and that is one of the regrets of my life.  I would have been willing to adopt, and actually would adopt a baby tomorrow if someone handed me one, but we had too many personal problems back then to get past the home study. 

By the way, if anyone is wondering:
I like sex and I don’t know if my experience of it is any different than anyone else’s.  I think knowing I couldn’t get pregnant helped, rather than hurt. This would lead into a discussion of sexual experience in general and my faith.  We are not bodies; we are not souls imprisoned in bodies; we are souls who get to live in bodies.  To treat the bodily experience as evil is to deny the rightness and validity and value of the incarnation of Christ.   Sex is important and pleasurable, but it is not a need like food or drink or shelter.  It must be within marriage.  These ideas are so foreign to most today that I might as well be writing it in Mandarin Chinese.  However, don’t take this to mean that I have put sex on the shelf because of this severe hormonal deficiency I live with.  Even now, totally off my hormones, sex is a good thing. Just not as often, but that’s another story.

Second, about the lack of smelling ability.  We Kallmanners don’t have olfactory bulbs; something about the pituitary gland not sending signals to other parts in utero is involved.  I do not pretend to understand the genetic end of it.  I really, really have a poor educational background there.  My parents have a sense of smell; my son does.  I do not know of anyone else in the family who has or had this condition, and I come from an incredibly large family.  My maternal grandmother had eighteen grandchildren.  My paternal grandmother had twelve children.  There are a lot of us Grahams and Fraleys and Roses running around.
I’ll be the first to say the lack of smell is just a plain nuisance.  I could never smell my son’s poopy diaper; I had to look—or feel.  I can’t smell farts, B.O., bad breath, stinky feet.  It’s all the same to me.  If the car or the house has some odor of fatal gas or chemical, I would be dead before I knew it.   And cooking:  Oh, my.  How many arguments have my husband and I had over that.  If it’s burning, how would I know?  A few years ago a friend brought banana nut muffins to work and I was enjoying them.  “So this is what banana nut muffins are supposed to taste like.”  She looked at me quizzically.  “I think I always burn them,” I explained.  “I can’t smell them.”  My sense of taste is not acute, but I don’t think I suffer too much from the lack of smell.  I depend a lot on the texture of food; trust me, I enjoy food too much, as my extra 25 pounds will attest.  Last week my husband ordered a dish from a Chinese restaurant.  This establishment cooked it with lots of squid.  I couldn’t smell the squid, but I surely had a nauseous reaction to it (ate it in Italy; fishy, rubbery baloney was my impression).

Obviously, some social problems can come from not being able to smell.  I am always fearful that I just plain stink.  I take care not to, but it still happens.  All smell is vicarious, surrogate.  I worry that my writing will lack an authenticity because of this deficiency.  Close family members have no trouble telling me if I do.  My mother used to tell me my hair smelled like a dog’s, that is, when I was growing up she would say that.  My husband lets me know that I have on too much perfume.  My son is quick to notice smells; his taste and smell are even more acute than his 
father’s.  At least I can enjoy the dogs whether they have a stench or not. 

But the real question is that of sexual identity.  Do I feel like a woman?  Of course I do.  I have all the working parts; they just didn’t have any gasoline.  I like most things women do:  a clean house (which is rarely achieved); clothes (very much—one of the reasons I love old movies is the beautiful outfits of the ‘30s, ‘40s, and ‘50s); children and being motherly.  But I don’t like fru-fru, don’t see the need for 50 pairs of shoes, can take or leave a girl’s night out (although lunch with friends is one of the joys of living).  I despise romance novels, finger- and toe-nail polish, the thought of plastic surgery for other than medical purposes; and I am indifferent all the celebrities I am supposed to love (Brad Pitt down to Oprah and on to The View ladies.) 

What defines womanhood anyway?  I really don’t know.  I do not feel now that I am any less of a woman, but in the past I did.  And don’t women have more freedom to be androgynous than men do?  A man who knits is berated; a woman who likes to shoot guns is “cool.”  A man who wants to be an elementary school teacher has to fight for respect from many (until he becomes the principal); a woman who wants to be a doctor is respected already.  This is not to say discrimination does not exist; it does.  I work in academia and despite their propensity for left-wing causes, academic men can sometimes be dreadful chauvinists.  A woman who knows what’s she’s doing and isn’t afraid to speak her mind with tactful firmness surprises men and some women, and she will have to work hard to convince people she is well-meaning even if self-confident. 

In looking through Kallman’s related websites, I came across the term “Intersex.”  Apparently some folks are equating Kallman’s with some sort of hermaphroditism.   I definitely don’t see that; in fact, I think that just makes any self-esteem problems worse.   And intersex person would either have indicators of two types of sex organs; or, he/she has neither.  As I said, Kallman’s sufferers have the working parts of their gender, they just lack the hormonal fuel to get it going.  And sometimes this condition can be idiopathic, in that it is not genetically traceable.  Along with the intersex “accusation” is that Kallman’s should be considered in a similar category with LGBT people.  Now, anyone who knows me well would know my feelings on that one.  Would we now have LGBTIK activitists?

I did not let Kallman’s hold me back; well, maybe I did.   Career-wise I have done well enough:  two graduate degrees, 33 years of teaching, three novels published, two textbooks, scholarly articles, loads of administrative roles, ministry credits, two blogs, technical writing credits, many friends, a well-raised son, in good standing with everyone, financially solvent, married for almost thirty years (that’s probably the biggest accomplishment), a teaching award, healthy, nice garden, incredibly, incredibly blessed.

I think I was held back more by my fundamentalist expectations of womanhood than by the Kallman’s.  However, I did carry a sense of shame because of it.  I didn’t want anyone to know.  I never told people.  I knew they wouldn’t understand, and it was just too complicated to say I had a hypogonadotrophic hypogonadistic disorder.  So I have gotten into a habit of listening to people more than talking about myself.  Most people, trust me, love to talk about themselves.  Especially men.  So they think me quite intelligent and charming because I listen.  What they don’t know is that I am doing research for one of my future novels whenever I listen.  I listen for phrases, for idiosyncratic ways of speaking, for tidbits of knowledge, for story elements.  And I just prefer to listen than to talk about myself, because I think I’m boring.  A colleague told me once, though, and he was right, that in being a listener who does not reveal much about myself, I am saying I do not trust the other person and in a way putting myself above them.    Aloofness becomes a way of life.   I think a combination of factors—the fundamentalism, working class background, family alcoholism, Kallman’s, self-consciousness about my looks—work together to create a desire to hide some of myself to everyone.  Maybe that’s why I blog.

Now, many people would wonder about the psychological and social effects of such a condition.  And that of course is where most of the literature focuses, since fixing the hormonal side of it isn’t all that difficult.  Websites and FAQ pages will say things like “Individuals with Kallman’s Syndrome might be shy and socially awkward. “  Looking back, I would say yes, I was.  Embarrassingly so.  What others seemed to know, I had to learn by watching and reading about it.  I can be blunt, and I can avoid other people.  Being alone is fine.  I never dated in college, and when guys don’t show an interest in a girl, she is going to suffer from poor self-esteem.  So I developed an attitude that I was not going to be inferior to men.  I had three brothers; men are no mystery to me, and neither are they a group I pander to to get what I want, or submit myself to just because they are male.  Odd words from a Southern Baptist; I hope the SBC is changing. 

One interesting side note:  Because I didn’t go through puberty until I was I my late teens, my brain did not “change.”  I hit a brick wall in my math learning; trigonometry made no sense to me in the tenth grade (I was in the advanced group), but I took two foreign languages in high school.  Children lose the ability to learn languages easily after puberty, but I didn’t go through puberty, so language learning was easy.  I still know Spanish very well, although I don’t “hear” it nearly as well as I read and speak it. 

Kallman’s  has always been with me; now I am middle-aged and past a time when the condition would make any difference in my decisions or opportunities.   It is in the past, so to speak, but it defined who I was and therefore still has an influence on me.

If you have read this and have Kallman’s, I am sorry but it’s not a death sentence and medical science has treatments if not cures.  If your child has been diagnosed with it, he or she will need lots of encouragement.  Be patient with him or her; your child is facing some things that are very hard to understand.  I realize I have written all this from a female’s point of view.  There are fewer of us, and all the websites I have seen focus on males.  Feel free to write me through this blog if you have questions or want to talk about it.

33 comments:

Anonymous said...

Recently my endocrinologist said to me that I have Kallman syndrome, i have anosmia, hear loss, eyes problems (primary congenital glaucoma) I don't have ovaries, I did osteodensitometry and I have osteoporosis.

Anonymous said...

Recently my endocrinologist said to me that I have Kallman syndrome, i have anosmia,hearing loss, eyes problems (primary congenital glaucoma) I don't have ovaries, I did osteodensitometry and I have osteoporosis.

Barbara G. Tucker said...

I would be interested in talking to you more about it, since I have never met another person who, to my knowledge, has Kallman's. I'd like to know how old you are, since you recently got the diagnosis, and how the endocrinologist made the diagnosis (I am assuming because of delayed puberty.) As I have had a child, I have the working parts, they just don't work. My understanding is the osteoporosis is part of it, too. If you want to email me, send to btucker@daltonstate.edu, my work email. I am a college professor in Georgia.

Anonymous said...

Thank you very much for your answer. I sent you my osteodensitometry.

Anonymous said...

I'm sixteen years old. On March 29th, 2011, I was told I did not have a uterus. I was fifteen at the time. I went to an endocrinologist, and had many tests done. My hormone and "smell-ability" levels were so low, the doctor said it was like they weren't even there. It's been nine months. I'm sixteen now, and I'm on Premarin .45 I took a "Smell Identification Test" and I believe I failed it. My dad walked by and knew the smells immediately, meanwhile I was still sitting there, not knowing what the correct answers were. Honestly, I've been depressed with all of the news on my health. I don't know what to do with myself. I'm only sixteen, I'm not supposed to feel this way.

Barbara G. Tucker said...

Dear friend,
I am so sorry to hear this. It is one thing to learn that you have extremely low hormone levels and no sense of smell, but your situation is worse if you don't have a uterus. I never knew the lack of smell and the lack of hormones were related until I was much older than you--in fact, only until recently. My ignorance of my sitaution pretty much defined my life with Kallman's. As I have written elsewhere, I never met anyone else with this condition, and still haven't, face to face, just through this blog and Facebook.

Is the premarin working? I mean, are you starting to look older, grow pubic, have breasts, etc. The beginning of menstruation would be the main thing usually, but that would not happen if you don't have a uterus.

You will need to have your endocrinologist/doctor refer you to a therapist or counsellor with whom you can talk about this. Unfortunately, and I wish what I am about to say were not true, it is hard to find anyone who is willing to talk about it or understanding. I tried to talk about it to a very old friend the other day and she not too delicately changed the subject. Talking through Internet is at least a start. Again, I am sorry to hear about your condition.

Ashley said...

Barbara, I loved reading this post. I was diagnosed with KS at 19 and have had a complete uphill battle with HRT, etc. I would love if we could be email pen pals. I've never met anyone with the syndrome before and your wisdom and experience really touched me.

Ashley

Barbara G. Tucker said...

You can email me at humteacher@charter.net I would love to talk. I never met anyone with it,well, ever. Only talked over email and facebook. There are a couple of facebook pages that can be helpful, although some of the folks get into some off topic stuff. I have posted on Kallman's elsewhere on this blog; I'll post the link below.

Barbara G. Tucker said...

http://partsofspeaking.blogspot.com/2013/01/speaking-out-about-kallmanns-syndrome.html

Justin Gregoire said...

I really enjoyed reading your post (I almost wished it were longer. haha!) and found it to be very encouraging. It's a huge contrast compared to the anger and despair I've seen on various forums and websites from others like us. I believe that God has a purpose for all of us and that His glory will be made known through the way we live our lives (do we live for Him or do we live for ourselves?)

Being a man in my early twenties, I can't say I'm quite comfortable with telling others about my condition; in fact, not even my closest friends know about it. Part of that is because I really don't think it's a good idea to reveal too much about yourself too soon, especially with people you don't know very well anyway. Also, I'm afraid that others would think differently of me (not that they don't already think I'm socially awkward.lol) Besides, what would be my chances of getting a girlfriend if they all knew that I was only half the "man" that everyone else is. :P

Come to think of it, I have never tried to reach out to someone else with Kallmann's. I tried to keep in in the back of my mind, but like a persistent itch, you have to scratch it eventually. I was diagnosed with it 6 years ago (I was 16) and I can certainly say I had my insecurities about it. Having a younger brother that was developing ahead of me didn't help matters either, but that's really all in the past now. I gave my life to the Lord since then, and for a while, I never felt that seeking out others that suffered like I did was necessary. Besides, why would I want to remind myself of the condition that practically ruined my childhood? I chose to tell myself instead that my condition didn't bother me; but it did. And it still does.

I strictly go by the verse that warns us to be careful of casting our pearls before swine. I believe our condition can be a powerful means of witnessing to others, but it's also very valuable in that same token; if the person you’re speaking to isn’t receptive to the holy spirit, then talking about it only diminishes its value. At the same time though, it’s not good to hold it all in. I should be a little more open about it, with my friends at least, and try to seek others with the same condition; not just to help me get over the condition that I’ve been so embarrassed of, but also that I may be able to help others get over the pain.

Barbara G. Tucker said...

Justin--your posting is phenomenal. I so feel what you are saying. I am 57 and only started talking about my condition in the last four years or so. Finally writing about it on this blog was a big step. I get a lot of hits from web searches, but I still don't know anyone face to face who has KS. It is extremely hard to talk about and for others to understand. You are right that the other websites often indicate a LOT of anger. I think it is harder for a man than for a woman (it is also far more common in men than in women, although not common at all for either).

Trusting the Lord through this does make a huge difference. I hope you are getting medical treatment as needed. I understand what you are saying completely, although I am much older and went through this in a time when no one talked about it and less was known about it. I so don't know what my senior years will be like, so I just live one day at a time as far as the KS goes, although the rest of my life is extremely full and I don't think I have let the KS influence that. On the other hand, I understand the "half a man or woman" idea. It is not true, though. You are not half of anything, we are complete, both as humans (we are just missing some important hormones) and as spiritual beings (you are complete in him, Colossians 2:10).

Anonymous said...

hiii... i woman and have kallman syndrome to... i had diagnosed when iam 21 years old.., can i email you? sorry for my bad english..

Chris said...

Wow, just felt the urge to google kallmans syn this evening and found your blog. I am a KS female diagnosed in my mid teens mostly due to lack of puberty and no smell ability. I am now 51 and just went off hormones. Really most of your blog was right on for me also. No kids. But I think that knowing this from early age, it is not a regret. I have never met anyone with KS either. My email is rocknt@mcloudteleco.com

Anonymous said...

Hello. I guess I will be another one to come out of the closet. I am 30 and was diagnosed when I was 18. I've never been ashamed to explain my lack of smell due to Kallmann's, but I have always felt a secret shame for being "less of a woman." I mostly find this notion silly now, at least I try to. Yes, I do look young, but that actually has always been a fun symptom for me. I am tall and thin, much like a 15 year old that just went through a growth spurt. I have very small breasts but I have always loved not having to wear a bra. In all honesty, this syndrome has given me the proportions and young face to do some modelling in my years...though I'm the first one to roll my eyes at how sad it it that our culture idealizes young teens over women with more mature physiques. My friend calls it my "forever 16 disease" and always says that with envy, so I take delight in it. I also always liked that I didn't have my period until I finally stepped out of denial and got some tests done. Unfortunately I do have osteoporosis. The one piece that I struggle with and come back to feeling less of a woman is that I don't have much of a sex drive. I also find sex painful. Everything looks normal down there but I do think that something is underdeveloped due to the amount of pain and tightness I experience, though no doctor has ever been able to pinpoint it. I've also thought it could be due to lack of estrogen after I learned that sex postmenopause is painful due to dryness. The lack of sex drive isn't just about an aversion to sex, it's a lack of libido, which can be hard to explain because I have no means of comparison. Sometimes I fear that I am asexual, which isn't a bad thing for some people, but it's not what I want for my life because I do have a romantic notion of finding a partner in life . I am very independent by nature so I know that I can't put this all on Kallmann's. It's partly due to my personality. I would also like to have children one day, especially when I hear success stories after so many years of thinking it's not possible. So in conclusion, Kallmann's has its ups and downs for me, and leaves me feeling pretty ambivalent...but is anything in life straight forward? Sometimes I feel like I'm living in Neverland. It's fun to have a pixie-like cuteness but my lack of biological drive sometimes makes my life feel inauthentic. Any advice or thoughts on this? Oh yeah, and I hate when someone has to tell me to put on deoderant or clean the cat box but I've learned to laugh that part off. My email is annabcd@gmail.com

Barbara G. Tucker said...

Anna, I am so sorry, somehow I missed this post of yours; I am not sure it came through to my email at work. I understand your feelings a great deal. I think you have expressed them better than I could, especially "sometimes I feel like I'm living in Neverland ... but my lack of biological drive sometimes makes my life feel inauthentic." I remember too when my son was little and I couldn't smell his poopie diapers; I had to look when he had a load! (He hates to hear me say stuff like that). The lack of hormones truly does have an effect on our perspectives and I think need for a "man." I'll be writing you.

Anonymous said...

Hi Barbara. I am 60 years old and was diagnosed with Kallmans Syndrome when I was 20. About 5 years ago I stopped taking Hormones because it seemed unnecessary. Now I am 60 and having some symptoms of being older and overweight. I am thinking it might be a good idea to see an endocrinologist as it has been a lot of years. Just wondering if there are things I ought to be thinking about as I approach older age. Is it silly at this point to see a specialist? I think one of the things that has confused me the most is not always feeling like a "normal" woman feels. Thank you for this blog.

Barbara G. Tucker said...

I would definitely go see an endocrinologist. I plan to in the near future--life has recently taken a turn for me (I have posted on this more recently in the blog) because I took care of my mom fulltime this summer while she was under hospice. But there''s a doctor in Augusta, Georgia, I want to go see who specializes in this.

Your story sounds like mine, with just a few adjustments for years--I'm 58, started hormones at 17, stopped about 5 years ago also. First year was rough, but I got used to it. I don't think I've gained weight from it but perhaps I have

Yes, that is probably the curse of Kallman's, other than the infertility--always feeling un-normal or abnormal or subnormal in relation to other women's experiences (but not their value) and also not knowing anyone who also has it. Thank you for writing.

Anonymous said...

I wanted to offer some encouragement. I was diagnosed with Kallman's at 21. It was hard not going through puberty but I hid it pretty well. I did struggle with feeling like "less than a woman". I was very blessed to have a great doctor who really explained things well and who always encouraged me that I was normal just my pituitary gland didn't send the message it needed to. All the parts are there. The encouragement I want to offer is this.....I am now 53 years old. I married a wonderful husband and have been married for 23 years. We have three wonderful children. We took pergonal to achieve pregnancy. I enjoy sex very much and have no dryness due to taking estrogen. Previous years to my diagnosis and first years were hard cause I was embarrassed but this problem is treatable if not curable and we can lead very full lives. I am a whiz at math and am a math tutor and was an engineer before having children, so don't think Kallman's effects your math skills. The Lord is in control of all and He will guide someone through this. We are worth a lot in His eyes. He created us in his image and died for our souls. You are not less than a woman. My husband has been perfectly fine with my problem and has no hangups about it.

Barbara G. Tucker said...

What a great story, especially that you had a doctor who could explain it. All of us need a doctor like that. Mine amounted to one randomly saying, "Can you smell? Oh, then you have Kallman's syndrome" but no info beyond that; at least I had a name, and when social media became popular, I found others that way, on Facebook.
I don't know if you read these other comments, but they are interesting. I get more response to this blog post than any others, I think because of the lack of opportunity for others to talk about it. My husband was great, too, but I wish we had had more children, although the one I have is super.
Yeah, about the math, it's funny, I think what happened to me is that my brain sort of stopped at that point but caught up later. I love math now and wish I had gotten back into it after I got treatment--I would have been able to learn it. I did ok on the GRE that I took three years ago, thanks to Khan Academy (I love them) and had to take a statistics course this summer and did ok! At 58!

Anonymous said...

I realize that this is a very old post but somehow I came across it and it really helped me. I am a 19 year old female and I was diagnosed with Kallmann's about 3 years ago. I have been looking for someone to talk to about my syndrome and just some of the general feelings that came along with it for me. However I do not have anyone to really talk to about it. So if anyone sees this and would like to talk I would be happy to :)

Barbara G. Tucker said...

Thank you for posting. I think this would be a good place, but there are also a couple of forums on facebook. There you might find someone you could talk to, although the forum as a whole tends to be dominated by men, who get KS more and experience it differently. I have not gone to those pages in a while but they were interesting, and one fellow from England posts a lot about the science of it. There are people from all over the world on it, too.
The problem I have found with KS is that no one is going to tell you in person. I am 58 and have met thousands of people in my life as a college professor, writer, etc, but have never met anyone who talked about it, only online. Why are we ashamed of it? Getting past the shame is the first step, I think. But just saying "Get past the shame" is like saying "forgive the abuser" to a victim. Easy to say, not to live. I think I am past the shame but I am on the other side of my child-bearing and dating years, etc. Like the poster above, I felt like an incomplete woman all those years before menopause even though it was just a lack of hormones, but that's a big deal. But again, I do think it's the inability to find anyone else with it (it's really pretty rare, esp. in females)
I hope we keep talking.

Anonymous said...

I do also feel as if I am an incomplete woman. I am of course only 19 years old so some of my feelings may just be normal feelings that someone my age has anyways. However, I have noticed there is no sex drive in me whatsoever. I was raised in a Catholic family and I do plan on waiting until I find someone who means a lot to me, it worries me that even just the thought of sex grosses me out still. I know there are some more experienced women out there that could aid me in this question. I am just scared that I am never going to have that drive.

Also just a little bit of my story, when I was first tested for Kallman's, they thought it was just a growth deficiency. However, after a year of growth hormones, I still did not hit puberty. After quite a few MRI's (and a couple IV infiltrations), I was diagnosed. I started Estrogen and Progesterone hormone therapy for about 6 months. However, the Progesterone pills caused me to faint on the first day of my cycle. So I got changed to birth control pills and have been on them ever since.

Lastly, I also do not know why it is so hard to discuss KS. Even on this page, I still feel scared to talk about it even though I know it is a safe zone.

(previous poster)

Barbara G. Tucker said...

A lot of thoughts and feelings here. I am not one to offer advice like I know everything (I know plenty of people like that as a person involved in evangelical Christianity) but I can share my own perspectives as just that.

As far as sex grossing you out, I would wait until you find the guy who understands, loves, and accepts you, and it might very well be a different story. It feels good (very good when it's right), but it is "messy." (Sorry if that's offensive). It's messy in a lot of ways but a wonderful expression of love, and a lot of fun. But our culture has so cheapened sexual activity that I have a hard time imagining young people having a healthy idea of it.

You are not an incomplete woman. But I can say that now, admitting to having felt that way a long time, not all the time, but it sat in the back of my psyche a lot. The parts work, you just need gas. We are more than our hormones. And there's always the deeper question of what does it mean to be a woman (or man). That's a question for the ages. So much of that is constructed by culture and our own experience and not by a larger view, whether biological or theological. What does the society around us say being a complete woman is? That's a place to question.

It is interesting that the birth control pills work for you but not the more common Estrogen/progesterone (which is essentially what I did, in variations). Could the fainting be due to something else? Hard to say, isn't it?

When you get to that point in your life where you want children, I think the treatments today are better than what was available in the 80s when I got pregnant, and there is more knowledge. A poster above said she had three children! I wanted more but have one, and he's great. Every one is different, but the thing about KS is that you more than likely don't have any other reason not to get pregnant other than the lack of hormones (by that I mean some anatomical issue) although I would recommend you take care of yourself in terms of nutrition. I have always been somewhat overweight but I don't think that is related to the KS. My father's family as all pretty big (as in many are obese) so it's just a thing I deal with.

Please feel free to talk here. It's all anonymous, really, except for me. I don't know who reads this other than people looking for websites on KS. I wish I could write more on it, especially the scientific side, but I am not a biologist, and as an academic, we are trained not to write about things we don't really understand. It does exist at the DNA level, though. There are sites that talk about the science of it but they are difficult for most. So please don't feel scared. As I wrote above, it's just rare that you'll meet anyone with it.

Anonymous said...

My 17 year old daughter was diagnosed with Kallmans a year and a half ago. She is small, shy, and although she is responsible and trustworthy, I worry so much about her feeling left out at school. At her age, the other girls are in cliques and can be discustingly selfish and heartless. She still has the mind of a young girl, and tries genuinely to be kind and be "a part of". These girls plow over her on a regular basis, leave her out when it's convenient, and show her very little kindness or compassion. Last night, for example, I attended a school function with her and it broke my heart right in two to see how she was treated. They just ignored the fact that she was sitting alone, sweet as can be, working hard on the volunteer assignment she was given. She cried when we got home because she felt so lonely. I love that girl more than anything. She has never done any harm to anyone her whole life. I want to help her, but I don't know how. I knowshe has to learn to make her own friends and have a voice of her own. I don't want to jump in to an area of her life that is important for her to figure out for herself, not that I could make friends for her anyway. Sometimes at home, I get impatient with her because she is "young" in certain ways and needs a lot of help. I am committed to changing my attitude of intolerance toward her on those issues. It's not fair for me to treat her that way, and I know she needs my love and kindness now more than ever. All her friends are going off to college next year, but she is still unsure what she wants, and I think she needs at least another year at home to allow the medications to start working before she will be mature enough to go to away. Thank you for writing this blog, as it gave me hope knowing others have led normal lives after KS diagnosis and treatment. Any suggestions on what I can do to encourage her and give her some self confidence?

Barbara G. Tucker said...

I read this and see your heart for your daughter so much. I'll give you my take on it.
First, I think girls are meaner than we were 40 years ago. She would probably face that kind of behavior today without the Kallman's, but the KS doesn't help. It sounds like she is introverted and quiet and responsible by nature with or without the KS, and the KS adds another element of difference, being "behind", or even shame, at least embarrassment. The bad thing is that other than a doctor, she will have a hard time finding anyone else who has the condition. I'm 58 and never met anyone else except onine. It's kind of rare in females, but I won't quote statistics because I don't know how they would know that anyway. However, once she gets the hormones right and starts to look somewhat older and have periods, that will help. I always looked younger than I was, except now, mostly due to wrinkles, since I'm blonde and we are more wrinkly.

As a college teacher of 35 years and a mother (son is 25), I think we worry too much about our children going off to college at 18 as if it's written in stone that they do. She won't miss anything if she goes the next year--no one will need to know, and you might save some money. I have seen many, many students go away to college and just not be ready, and it had nothing to do with KS. Living in a dorm and adjusting to college is just a lot to do for many students. I have even known students who went, checked into the dorm, went the first day, and then came home the next! Or they stayed longer and their parents were literally out 1000s of dollars.

My point is that going to a local state university or college to take her beginning credits is not going to be a big problem and will help her find out what's interesting to her. I don't know what state you are in--I'm in GA and work in its university system--but the credits will transfer if the college is accredited and the teachers in those kinds of colleges are usually very dedicated to teaching as opposed to research, which is what you will find in big universities. That being said, I did go off to college 600 miles away the same month I started meds, and it probably made the adjustment harder, but I am kind of dense and just do what I feel like and deal with the consequences later.

Barbara G. Tucker said...

I am not going to pretend that having KS is ok. It can be devastating sometimes, especially in regard to fertility. I only had one child and really wanted more. I do think I allowed it to affect my self-esteem and I settled for something in my life, as if I didn't deserve better. On the other hand, I have been very blessed and able to do a lot. At my age I am a little concerned about the effects of taking hormones for so many years, especially since my mother died of uterine cancer this past summer.

So, do I have any advice? The more activities and clubs you can encourage your daughter into, the better. Kids in schools can be jerks, but if they have a shared interest, it's better. She can meet people who she can relate to. In college, especially if she goes to a local state college or university (like a commuter college), she will be in class with people of all ages. I have students who are 18, 24, 30, 40 and older in my classes, and they learn to relate to each other, whereas in high school everybody is the same age and there is more peer pressure.

Self confidence comes from being good at something, so the more she can do that she finds she is good at. I got into drama and speech competition in college and even worked in that for many years.

Fitting in, feeling "normal," going with the flow, being accepted (but not necessarily being popular) are all very important to young people and really at any age. I confess to not always feeling normal, but I had other reasons not to--my father was an alcoholic who died when I was 16, we didn't have much money, I had a severely disabled younger brother, etc. So KS complicates life, but it doesn't have to define life. Just keep affirming your daughter and keeping her active and finding what suits her. I hope some of this is helpful. God bless you.

Megan Chandler said...

I have kahllmans syndrome, I was diagnosed at age 17. I did genetic testing that was sent to Harvard University for them to study. I have no sense of smell! I've seen an endocrinologist and they referred me to visit an obgyn as they would specialize in reproduction part of life.

Megan Chandler said...

I have kahllmans syndrome, I was diagnosed at age 17. I did genetic testing that was sent to Harvard University for them to study. I have no sense of smell! I've seen an endocrinologist and they referred me to visit an obgyn as they would specialize in reproduction part of life.

Megan Chandler said...
This comment has been removed by the author.
Barbara G. Tucker said...

Hello, Megan. Thank you for posting. I have not moved forward to getting more research done at this stage in my life. I hope you get good care with someone who understands your syndrome and doesn't just give you drugs and not address the other issues, mostly psychological, with KS. There is more to having it than just getting hormones so you get a period. The smelling thing is annoying overall. But I do have a pretty good sense of taste, which is not supposed to happen--same with you? God bless.

Megan Chandler said...

I have a pretty good sense of taste. My doctor has only prescribed me progesterone patches, I have not really noticed a significant difference. I agree the smelling thing is super annoying, it still kind of makes me a little frustrated when family members ask me to smell things.
Godo bless.

Katrina said...

I know this is an old post but I just found it today and started crying..I've been praying for years to find someone out there who really knows what it's like to live with this.. I finally feel like someone understands. I'm a 29 year old female, was diagnosed about 11 years ago. I thought I just had a cold perpetually growing up, thats what I would say whenever someone asked me to smell something "I cant, I have a cold" It made me truly feel worthless some days.I wanted to be a chef. I gave up though early on because to teenage me, how can I cook when I cant smell the ingredients.. or know when something in the oven is burning.. or when I cant taste garlic or onions? I wanted to be the one who could go with my friends and try perfumes.. and get flowers in their rooms to make things smell pretty. to know what its like to wake up to the smell of breakfast.. to know what my parents smell like, or my baby siblings. I even remember saying to my doctor "you dont understand I'm basically a man. I dont have a period, I have practically no breasts..(I was barely the lowest a cup)" im so grateful to her for her response though, she said something similar to what you said here. "you are a woman. you are FAR from a man. yes your breasts are small. but look at kate hudson. is she a woman? she has small breasts. sometimes you cant tell she even has any! as for the periods, does a baby, or a little girl have them? no. are they still female? yes. you are just as much woman as anyone else. you just get the benefit of not having to buy tampons every month!" I am apparently fine as far as having "all the parts" and just needing the fuel as you say. when I was first diagnosed, they attempted to give me estrogen pills at a very very low dose, the lowest they could. they said it would "kickstart" everything and that i would be normal and just fine. it made me so sick I had to stop within weeks. a few months later I had one period, very normal in length and such. I never had another one. within the last year though I suddenly had a severe bleed for several days, so much so I was sent to the emergency room. I thought it was a period! they put me on progesterone if I remember correctly, to thin things out because they discovered I have uterine fibroids. I stopped after a few weeks or so and then 3 days later started again for a 14 day heavy bleed. it really has soured my outlook in a lot of ways, because I have to plan every day for the "just incase it happens today.." the whole thing really bothers me because I desperately have wanted my whole life to have that husband 1.5 kids and a dog with a picket fence life. and I cant find a single thing online about whether its even possible to conceive naturally with kallmanns, let alone the fibroids. because if just 25mg of estrogen makes me so sick I cant even function beyond low level zombie.. how can I ever do these treatments? but.. just knowing they are out there and have worked.. that if I really want it its possible it could happen with help and I dont have to live my life without a child. it really makes me feel hope. I don't feel alone anymore..or like a freak who will never have the joy of holding my baby. after reading this..I feel like anything is possible with enough patience and faith that if its meant to be, I will be a mother. thank you so much for providing the answer to my prayers..the hope I thought was lost forever. Thank you.

Barbara G. Tucker said...

Katrina, your post/email was very touching to me. I would suggest trying to find a really knowledgeable doctor on endocrinology and/or Kallman's. You shouldn't have to deal with the irregular bleeding--that can't be good.

I have sometimes felt like a nonwoman, which is sad and I think common. If you read the other posts here, they are better than mine in telling how women have dealt with that. The infertility is the worst. I would not give up hope. You are obviously a person of faith so you have something bigger than just medical science to trust. I tried to get pregnant four times and I don't know why the second time worked and the others didn't. That was just a miracle even if I was shot up with hormones. Having a child is wonderful but raising him/her is better, so adoption might be how that need is answered for you. I don't know. That's no one's place to say but yours.

It's funny but the smell thing, at my age, is just not an issue anymore. It has been, though--like you, I burned a lot of stuff when I first got married and cooked!

Thank you for writing. I am sure what you posted will help another woman. I have never met another Kallman's patient face to face. I wish I had, though, but it's not something anyone would talk about until you knew them really well. God bless you.

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