Trevor - Australia

I was reading your web site and thought I would drop you a line all the way from Sydney, Australia.

By way of introduction, I was diagnosed with GT back in the mid 70’s, which I understand from my Haematologist at the time, I was the first Australian (very rare indeed!) – I am now 48, and whilst I still have nose bleeds (thankfully not as severe as back in my earlier days), I am fit and healthy.

I can recall when I was in my teens, I used to live in inland Australia where the climate was very dry and very little humidity. In those days, I also played contact sport such as Hockey, Aussie Rules Football and other activities which an active teenager often found themselves doing (not recommended I know, but I refused to be wrapped up in cotton wool!). I suffered constant bruising (very purple and large) from coming into contact with objects, but I managed to survive. The nose bleeds were the worst and most frustrating part of GT – they sometimes lasted 24hours or in some cases, up to 5 days – medical treatment procedures from the Ear Nose and Throat (EN&T) specialists were pretty limited in those days – cauterisation of the blood vessels was one of the recommended procedures, which done with a hot iron was not my cup of tea I can tell you. I then had my nose packed with gauze, which was saturated with Vaseline – however, when they pulled the gauze out (you guessed it) my nose would start bleeding again, albeit not as severe. I recall being very sick one day, having lost over 3 pints of blood, the EN&T surgeon even considered a blood transfusion which thankfully I recovered and didn’t require in the end. Later they discovered a plastic balloon would do the trick, which was inserted into my nose and inflated accordingly (ouch!).

It wasn’t until around my 30’s that I noticed the symptoms were not as severe (my Haematologist also advised that the symptoms diminish as you get older) – I still get the odd nose bleed, often in winter when it is dry and sometimes around 2-3 times a year, though living near the coast has helped and especially in summer where it is very humid in Sydney (I also put Vaseline up my nose 2-3 times a day to keep the area moist). The nose bleeds can still last up to an hour, but have learnt to deal with that through the standard procedure of pinching the nose at the base and putting ice at the back of my neck which seems to work all the time. In terms of the bruising, if I knock myself I will still bruise, but not as bad as in my youth.

In all my years, I have never let GT get in the way of my life – I have played most sports, travelled extensively around the world and have two wonderful children, who incidentally have been tested for GT and don’t have any of the symptoms. The other item that may also be of some interest is that apparently there are only twelve people in Australia that have been diagnosed with GT and it is very common in people born around the North African regions, though I can assure you I am a dinky dye Aussie!

I view GT not as a disease as such, but a disorder (that’s the way I look at it from a positive view anyway) and I hope my musings may provide some hope to any sufferers out there and that aside from the frustrations early on, you can and should end up leading a normal life.

Please don’t hesitate to contact me if I can be of any further assistance or provide any help.

Keep up the good work.

Warm regards,

Trevor

Trevor Builder
147/1 Katherine Street
Chatswood NSW 2067
Australia
Mobile: +61412 451 219
Email: tbuilder@unwired.com.au