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Post Info TOPIC: Haemochromatosis


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Haemochromatosis


Nest year we are doing the big lap For 12 months, and carefully been planning for a couple of years. Trailer and car are sorted as are possible itinerarie. However, I suffer from Haemochromatosis which is the most common male inherited disease in the world.  

The treatment is quite simple, just have 500ml of blood taken every ten to twelve weeks.  However I am not sure how to organise this on the road so Are there any other suffers on the road and how do you go about it!  Thanks in advance

 



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Guru

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Have a look at Health and wellbeing. Their is a thread on haemochromatosis.



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Chief one feather

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Welcome to the gang Shoes, enjoy here and out in the playground.

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Guru

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G'day Shoes. Welcome to the site. May I suggest you have a chat to your GP or Specialist. They should be able to point you in the right direction.
Cheers.

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Why don't you give blood to the Red Cross?
Regards

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Hi Shoes,

I too have that problem and any Red Cross blood bank would be happy to take your donation. We have been doing this for the last 10yrs. The fact that your blood contains excess iron does not matter as they can easily separate it. You would find the Red Cross in all large towns. Hope that this helps.



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My husband has Haemochromatosis and when we travel we use the Red Cross Blood Bank location search www.donateblood.com.au/donate to find suitable blood bank locations along the route. A couple of weeks before he is due to have blood taken we ring and make an appointment. It does take a little planning and occasionally changes our plans slightly, but its quite doable. Because my husband isn't allowed by blood bank rules to donate blood (we lived in England for a few years during the mad cow disease time) his appointment has to be a medical appointment and not a donation, slightly different paperwork, but it works ok.

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Senior Member

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Informative and thank you all as I had my first blood letting a few days ago so all this information will be handy when I get moving.

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Member

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Guys the Red Cross is an interesting one! They have certainly not made me feel welcome in the past - required paperwork that needed refilling every six months, so things must have changed. I will contact them and see what We can do! In Brisbane they have shown little interest and actively made it difficult ( my doctor suggests this is due to the AIDS, mad cow environment)Thanks for the replies.


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First time out, so discussed with the Nurse about where to get it done. If you have recent blood test results and a letter from the practitioner, blood bank will do it and discard the blood. The Nurse told me to discuss it with the doctor as other Grey Nomads get regular bleedings in the day patient section of the hospital and this is what they do.

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gerard gue wrote:

Why don't you give blood to the Red Cross?
Regards


There are a few restrictions - the Red Cross wants blood that they can USE - if you are new to venesections, you will more than likely have blood with a very high iron stores count, and you will have to have a program made up by your GP and approved by senior Red Cross doctors - they don't want to waste RC staff costs to have to throw the blood away and not use it for their life-saving programs - they would rather you use a GP to perform the 'throw-away' venesections. Only if the program has been APPROVED, you can visit the Red Cross at the agreed intervals, but the blood will initially be DISCARDED. You will be registered as a 'Therapeutic Donor'.

The Red Cross have a defined cut-off limit - if you are over that limit, the blood is discarded, but once you have proved, by several consecutive visits, that you are under their threshold, then you can visit 'normally' like any other donor, and your blood is USED by the Red Cross. I've been doing this for the last nine years or so. The normal minimum period between donations is three months; only if you have an approved program, will they allow you to donate more frequently - similarly, if you let your donations periods lapse too long, you may have to go back to an approved program, to 'normalize' everything again.

Regards, Brian



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Member

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LL blankstare thanks for that. So basically letter from GP, and try Blood banks in major centres



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Member

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Gerard Sue, thanks for that! It explains why they were not interested when I started the journey 9 years ago. I have gone from weekly bleeding to every ten weeks and have just on or just under 50 for the past year. I will contact the blood bank and discuss with them again.

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