Monday, November 25, 2013

Movember update

Well I think some people are a little confused about Movember.  It is basically a charity fundraiser to support mens health.  Since men are c*#p at supporting their own health issues I think this is a truly inspired campaign.  For more info see:-

http://au.movember.com/programs

Anyway, I just thought I'd show you some of the new piccies I have of my mo.  My dad would be very pleased to know that since about the two week mark I have really found the mo a no no and on December 1st it will be a go go.

Anyway, for your owen personal amusement I will give you a couple of pictures.  Personally, I don't like the colour or the fact it is lighter at one side but anyway, here it is:)

Stay well:)



Saturday, November 23, 2013

Medical Tourism

Recently in my own little world I joined up with a group of fellow patients and members of the medical and scientific community to talk about stem cell tourism.  It was both interesting and informative.  The debate could only go to further progress but there are a couple of points I want to make.

First, medical tourism is dangerous.  Normally when you seek medical attention in a western, developed society you can be confident that there are policies and procedures in place to safe guard patients.  When you go overseas you cannot be sure that you can be afforded the same assurances that you receive at home.  Even if you travel to another developed country you may find that the practices are a little different so you have to be on your guard.

After saying that though, if you haven't found the right answers at home looking overseas is a strong option.  You just have to be careful.  You are not going to be afforded the protections you receive at home so you have to be 100% responsible for what you undertake.  This means studying the procedure, the doctor in charge and key medical staff and the facility you are being treated in.  Even a little study into the host country and city and their culture is a good idea.

Unfortunately there are a lot of charlatans and snake oil salesmen out there who just want to peddle false hope preying on peoples desperation in order to make a fast buck.  If you don't do your homework it could be very easy to fall victim to these monsters.  It is also important to note that these underhanded tactics are not just the domain of overseas operators, they can also happen at home so practicing due diligence is important anywhere, just a little more so when you want to go overseas.  It is also important to recognise that you can also receive some of the best treatment in the most unlikely destinations.

The second point I want to make is that I really have a disliking to the name "Medical Tourism".  When I think of tourism I think of morally casual 20 something year olds tearing it up on a European Contiki tour.  Being a tourist is not something you feel like when you seek medical treatment overseas.  When I was receiving chemotherapy in North Western hospital in Chicago I guarantee you that the last word I would have used to describe myself is tourist.  Maybe we could call it international medicine?  Until next time, stay well:)

Monday, November 11, 2013

Movember update

Well, the first and most important decision I had to make all year!  What mo to grow?  In the end nobody made comment on my blog as to which one but I did get some comment on my Facebook page which was really no help as I had one vote for each of the choices.  So I had to deliberate on which one to grow and I have gone with the Eroll Flynn.

Now I have to remind you all to open up your wallets/purses etc and make a donation to a mighty fine cause as it is a great cause.  The link is below:-

http://au.movember.com/mospace/6659833

Also, thanks to my kids who have been the first to graciously raid their piggy banks to donate.

Until next time, stay well:)


Wednesday, November 6, 2013

Great news!

It's no secret that Australia is sorely behind the rest of the world in promoting HSCT as a treatment for autoimmune diseases.  The article I blogged about a couple of weeks ago just proves exactly how ignorant we are too.  It is embarrassing that as a highly developed country that claims to have one of the best health care systems in the world and also be a self proclaimed leader in medical research we are left wanting.

BUT it is changing.  The trial at St Vincent's hospital in Sydney is proof of this.  They have now done about 20 scleroderma patients, 6 MS patients and they have just commenced the process on the first CIDP patient.  While this is great news it can also be used to highlight the short comings of the Australian system.

A friend of mine and fellow CIDP patient Peter Langford, more commonly known as Pops (he jokes even his mother calls him Pops) has just had his chemo mobilisation.  Pops and I met on line in September of 2011 and found we both had CIDP and we were interested in HSCT.  Now I decided to go for the treatment in Chicago.  Unfortunately for Pops he couldn't afford to go to Chicago so he looked high and low for an Australian option which he found at St Vincent's with Dr John Moore.

Now about six months after I had started looking into HSCT I had gone to Chicago, had my transplant and returned to Australia.  Pops is still waiting after two years, but at least the end is in sight.  He seemed to get through his mobilisation OK too, so hopefully a month from now he will be back home recovering from his transplant.  It has been tough for him too, enduring false positive results for HTLV1 virus and just undergoing the complete battery of tests that we all have to do for HSCT.

The issue is that Pops has had to not just wait, but suffer and endure his disease unnecessarily for nearly two years whilst at the same time costing time and money with expensive, medicare approved treatments.  Australia, you need to get your act together, stop procrastinating and start saving lives.

Until next time, stay well:)