travel with thalassemia mayor

Hello everyone, I'm 33 years old, live in Padova in Italy, weighing 48 kg, 151 cm high, do 2 bags of 300 grams of red blood cells filtered every 20 days.
I did Desferal up to 17 years later Ferriprox up to 30 and now I take 3 tablets of 500mg of Exjade.
values for iron are fine (always less than 2000)
I am also taking 1 tablet of 500mg of resveratrol
I only found this site today.
my compliments! great job!
I searched news thalassemia in the world because I'm about to embark on a trip to Europe a year!
(France, Spain, Portugal, Holland, Denmark, Germany, Norway, England, Ireland)
I try!
Has anyone experienced long trips?
I will try to find hospitals for transfusions in most of Europe!
I'm tired of having to do rentals for short periods ... @$#%!
I hope not to find problems with the payment of therapies ... I'm lucky ... in Italy therapies are completely free!
I ask your help in understanding how treatments are paid to you who live in other states and to understand what are the best hospitals to turn.
Obviously if you plan to come to Italy please contact me and I will help you very very happy!
sorry for my bad English ... I use google to translate;-)
Gian

hi!

welcome to the site!

i've always wondered how long trips would work out, i'm sure you'll get wonderful advice from the members of this group- i know i always do!

i hope you have a wonderful time and if you could please contact the places where you plan on getting tranfusions, get the required details and inform them of your coming. oh and you probably need to keep your meds prescription along with you.

have a great time!

the real problem is not finding hospitals for transfusions but understand if I have to pay personally.

i'm lucky because in Italy a thalassemic patient does not pay transfusions and chelation drug, but the offices of health are not well informed about how it works abroad.

once again in this corrupt world the quality of life is tied to money.

Doesn't the EU provide medical care in any member nations? I thought that if you traveled within the EU countries, that your medical costs would be covered.

I'm sure Andy is right, all EU countries have an agreement to provide healthcare for their citizens.  In the UK you can apply for a health card to use whilst travelling in the EU which will entitle you to health care in an EU country.  I think the difficult thing will be trying to forward plan and get agreement from the hospitals in advance.  I have never attempted this but if it were me I would start with my hospital doctor, plan your trip in advance knowing which countries you will be staying in and for how long.  Try and see if your doctor can refer you to a hospital in each country and have him copy your medical files and agree a transfusion and treatment plan with each of your temporary doctors.  I honestly think the hardest thing will be trying to get these hospitals to agree to treat you temporarily, but I'm sure yor doctor will be able to arrange this much easier than you..  In Italy do you usually buy private travel insurance when going abroad?  You may have to do this to cover any non-thal related health issues you may encounter.

Also is there an Italian thalassaemia society/charity?  You may be able to get more helpful advice from them regarding Italians travelling throughout Europe.  I'm sure that they will have had members who have travelled before and may be able to help.  You could also try and find any similar thalassaemia societies in each of the countries you intend to travel to and ask their advice.  The UK thalassaemia society are a very helpful charity if you were planning a stay in the uk.

it is not difficult to agree with the hospitals of the various states for transfusions.
is very difficult to understand if I have to pay the transfusion abroad.
The European community is not yet true one state.
each state has different domestic laws regarding payment of costs for treatment abroad.
every European country must provide medical care but the payment varies from state to state.
an Italian thalassemic in Italy does not pay anything for the treatment of thalassemia but for trafusions abroad will come as a citizen of the place.

for example: if a Luxembourgthalassemic  in his country pays transfusions, an Italian thalassemic in Luxembourg will pay them.

request information from the offices of the Italian health system is terrible:
I was told to contact the embassies and consulates abroad.
consulates and embassies abroad do not know anything about health and they told me to ask the foreign offices of health.
foreign offices of health told me that I care but do not know how my state I will pay for treatment abroad.

Last year I had a transfusion in Switzerland:
After one month I only paid 90 Swiss francs, but the bill was paid 700 Swiss francs from the Italian state

I hope that the European thalassemia in their country do not pay for trasusioni so I should be treated equally

I thought that if you had free healthcare in your own country you are entitled to free healthcare in any European country and that your own country would pay the bill if required, like your example of your time in Switzerland.  I have a feeling this is going to prove very difficult to organise.  I would definately try and find any thal groups from the countries you intend to visit and ask their advice.

My husband just pointed out that swizterland isn't an EU country so apologies that example doesn't work ;)

Hi,

i am not really sure how it works, but i can suggest to get in touch with the Whittington Hospital in London for your transfusions when you are in England. they have one of the best thalassemia centre in Europe/world.  You can get in touch with the UKTS (UK thalassaemia Association) Elein the Secretary is very helpful and i am sure she will be able to help you.

for Germany i haven´t had blood transfusion here yet but they do accept the European health insurance card and you only have to pay 10 euro.

Buona Fortuna

thank you very much Astrid!!!

my travel start from Spanish near Girona, Barcelona....anybody know one hospital there?

thanx

Hello!

I'll write the same in English and a bad Italian in order to help you with the understanding.

I'm from Sabadell, Barcelona and I am Thalassemic as well. You can come to my hospital (Parc Taulí, Sabadell) or you can go to Barcelona (Vall d'Hebron).

If you need to, I can give you more details about my hospital.

About the cost, you have to bring with you from Italy the European Health Card. It is a blue card that the goverment gives you in order to have health assistance all around the European Union.

Hope it helps you.

Ciao,

 Sono di Sabadell, Barcellona e sono anche talassemia. Si può venire al mio ospedale (Parc Tauli, Sabadell), o La Vall d'Hebron (Barcellona).

 Se necessario posso fornire più dati sulla mia ospedale.

 A proposito del prezzo, occorre la tessera europea di assistenza sanitaria. Dà il governo e lei fornirà i servizi medici in tutta Europa. Voi portate il vostro Exjade.
 Speranza che aiuta.

thank you very very much for the help Laura!!!

Hello!

When are you starting your travel? Are you going to travel around alone?

Kisses!

Laura.

Thank you for bringing this up. I have read it a few weeks ago and never came back to answer. I finally remember my pasword again. I study law, if that is a benefit, I live in the Netherlands and I am willing to help you. Recently there was a new law on this, but does it works for travellers? Time to find out!