--- In anosmia@yahoogroups.com, "Jan" <janpinf@...> wrote:
>Thanks, Jan, for the info. The reason they thought I might have
Kallman's was because I cannot smell, and I have trouble conceiving.
My periods were about three months apart and horrible. I had to have
hormone supplements to conceive, and without them, I don't have
periods at all anymore. I don't have any abnormal anatomy, but
intercourse was excruciatingly painful up until I found a birth
control pill that had the right combination for me. I also have
bladder and bowel issues that I'm unable to find a cure for. It has
been suggested that I have Celiac disease, so I went on a gluten free
diet along with a handful of medication for the spasms. Some days
are good, others are not.

My new husband is a prince to put up with all the craziness. My ex
stayed angry all the time and had very little patience for my
differences. The OBGYN says it's my ovaries and uterus, the
gastroenterologist says it is celiac disease, the psychiatrist says
it is anxiety disorder, the urologist says it is overactive bladder.
I think I just hit the genetic lottery and won it all.

I don't really care if I can smell or not. I just wonder if all
this stuff is related, and what can be done so that I can go shopping
with my mother and stay out of the bathroom for more than half an
hour. I believe God loves me and has a reason for allowing me to go
through all this, however, and His grace sustains me through it all.

Thanks for sharing!
Heather
> Hello Heather,
>
> I do have Kallmann Syndrome - Hypogonadotrophic Hypogonadism with
> Anosmia.
>
> Strictly speaking, for someone to have the syndrome (a collection of
> symptoms) they need to have both the anosmia/hyposmia and the
hormone
> deficiency symptoms. Though in some families where there are KS
> associated genes, some have the hormone deficiencies only (IHH),
some
> have the anosmia only, some have bothboth (KS) and some have
> neitherneither.
>
> Only about 11% of KS cases are associated with the X chomosome gene
> Xp22.3. The majority of cases seem to be linked to autosomal
dominant
> genes with some autosomal recessive cases too. So far at least 3 KS
> associated genes have been found on various chromosomes other than
X,
> though there are undoubtedly more yet to be found. With the current
> state of knowledge, only about 30% of KS cases would show anything
on
> a gene test even where there is a strong family pattern of KS
symptoms.
>
> There is also a gene on chromosome 19 which is associated with
> congenital anosmia, but not so far with Kallmann's.
>
> Mental retardation is not a symptom of Kallmann's.
> However, some very few people who have a large number of genetic
> mutations on the X chromosome may show mental retardation in
addition
> to Kallmann's.
>
> Personally, I'm not bothered at all about the anosmia :-)
> It's more often a source of amusement for me, than of distress.
>
> Cheers:-)
> Jan - 60, female, central England, Kallmann Syndrome
>
>
> --- In anosmia@yahoogroups.com, "heatherdouthit" <heatherdouthit@>
> wrote:
> >
> > Hi Toxic---cool name!
> >
> > I'm a new member too! I'm anosmic since before I can remember.
I
> > don't remember ever smelling anything. I'm 37 too, and it has
been
> > suggested that I may have Kallman's syndrome, but I did have a
slight
> > head injury when I was three or four years old. My brother has
an X
> > chromoseome deficiency that causes mild retardation, but he has a
very
> > keen sense of smell. I have to remind even my own family members
that
> > I can't smell, and no one believes me the first time I tell
them. I
> > have lots of cool stories that make most people gag! Whether I
was
> > born this way, or acquired the condition thanks to my brother and
a
> > baseball bat makes no difference. I just don't ever remember
smelling
> > anything! Can't wait to hear more from you.
> >
> > Heather.--- In anosmia@yahoogroups.com, "toxicshockmix"
> > <toxicshockmix@> wrote:
> > >
> > > Hi everyone! I'm so glad to be a part of this group! I'm 37,
single
> > > and have had this condition my whole life. Most people don't
beleive
> > > me when I tell them about myself, so now I don't really say
anything
> > > unless someone asks. But I just wanted to introduce myself and
say
> > hi
> > > to everyone!
> > >
> > > Toxic
> > >
> >
>