There comes a time when something happens for the first time. Since I've been writing this blog it's only been me putting pen to paper on here. No one else has written for me. Well, this is the first time that this has happened. Today's post is written by an ex colleague of mine who suffers from Kallmann Syndrome, another endocrine condition relating to hormones. When we worked together we frequently compared our respective ailments. Here's Neil's offering. Now for me to shut up and let him run the show for the evening.
The following quote was posted as a Facebook status by a colleague of mine with type I diabetes:-
“Dear diabetes, since entering my life in a rather forcible manner fifteen years ago, you have since been a most unwelcome guest who out stayed their welcome the minute they arrive. Now kindly do the decent thing and fuck off out of my life. I don't want to be defined by you anymore.”
This quote struck a chord with me. I don’t have diabetes, I have another endocrine condition called Kallmann syndrome. The above quote could quite as easily be attributed to Kallmann syndrome as it can diabetes type I.
Kallmann syndrome is a rare hormonal condition in which the major symptom is the failure for the patient to enter puberty or to fully complete puberty. Untreated patients would have very poorly developed secondary sexual characteristics and will almost invariably be infertile. It is also associated with a lack of sense of smell. The root cause is the failure of the release of the gonadotrophin hormones (LH and FSH) by the pituitary gland.
Diabetes is fairly straightforward to diagnose, even if doctors sometimes get Type I and Type II mixed up.
KS is harder to diagnose as it is normally a case of eliminating all other possibilities first. The biggest hurdle is getting a diagnosis when as a teenager you are constantly being dismissed as a “late developer”. There is no simple blood test for KS. It is not a widely known condition and diagnosis is often delayed well into late teens & early 20’s by which time the benefits of early treatment and diagnosis are lost.
Diabetes is far more intensive to treat, can be a major struggle getting blood sugar levels correct and can have serious complications, both short term and long term if you do not get the treatment right.
KS is fairly straightforward to treat in comparison; a lot of people with KS get a testosterone injection every three months and this is all they need. It gets a little more complicated if fertility is required, but compared to diabetes the treatment of KS is very simple. Testosterone, while an important hormone to have is not in the same league as insulin when it comes to its importance for day to day life.
In both conditions you are treating the symptoms rather than the root cause. You never cure either condition; you can only hope to control its effects.
In both conditions you are often left feeling tired & lethargic, either due to fluctuating blood sugar levels or very low testosterone levels.
In both conditions you sometimes have to deal with some medical professionals who have little idea or understanding of the condition. Knowing that Type I diabetics are not the same as Type II’s and have different needs & requirements would be a good start. It is the same for people with KS as most of us are seen by doctors who have not even heard of the condition and don’t know the full range of available treatments that are available.
In both conditions you are stuck with a condition you have little control over. You can’t really escape either condition and it is only really a fellow patient who can totally understand the problems you go through.
Just how much each condition defines our life is a debatable point; I think it varies from person to person. I think it is impossible to live with a condition such as KS or diabetes type I and not let it affect your life. However by talking to patients with other endocrine conditions sometimes you can get a better perspective on your own condition.
In my conversations with my colleague I think we can both safely say neither of us would want to swap conditions.
Here's the link to Neil's own blog site: