Braşov

On 30 of May we had an invitation to Braşov.
I went with Andrei Daniel, the vice president of the Romanian Hemophilia Association, to participate to a very special event.
The hemophilia patients of Braşov County established their local association!
They elected their staff.

Their first president is Mr. Lungu Ion, who is well known as one of the best volunteers in that region.
I'm very happy for them. I hope that if we shall be more and more, so we can change the health system in Romania.

LOOKING FOR NEW STRATEGIES

On 23th of May, our local organization together with the national association organized a meeting for all the regional organization's staff an important meeting.
We had to decide about, how to continue our actions in the future. It is obvious that we can't continue in the same way, because the money for the factor supply was reduced drastically.
At the end we made the conclusions and made schedule for some actions, which will be more radical than we did before.
We had special guests too:

Dr. Varga Gábor, President of the Hungarian Hemophilia Society

Prof. Univ. Dr. Baghiu Maria-Despina , Târgu Mureş Hospital
Dr. Szélessy Zsuzsanna, Hungarian Hemophilia Center
Radnóti Balázs, member of the Hungarian Hemophilia Society
The sponsor of of the event was the Novo Nordisk.
Here is our press communication in Romanian:
ŞAPTE TINERI CARE PUTEAU TRĂI
In acest weekend, in 23 mai, Asociata Romana de Hemofilie a organizat intalnirea reprezentantilor asociatiei din cadrul tuturor filialelor ARH, unde au discutat problemele cu care se confrunta persoanele cu hemofilie din Romani la ora actuala. La aceasta intalnire au participat si reprezentantii Asociatiei Maghiare de Hemofilie care ne-au prezentat asistenta acordata pacientilor lor, ceea ce a demonstrat o diferenta uriasa de tratament si abordare asupra problematicii pacientilor cu hemofilie.
România se situază printre ţările lumii a treia în tratarea ecestei boli. Numai în anul trecut 7 tineri au murit din cauza acestei boli.
Tatal unui baietel cu hemofilie, Dl Kiss Laszlo, a prezentat perspectivele sumbre ale părinţilor cu copii care suferă de hemofilie şi a cerut sprijinul asociaţiei pentru a salva aceste fiinţe tinere de o moarte prematură.
Adultii cu hemofilie, forma severa, din Romania au deficiente articulare si motorii, dezvoltând dizabilităţi permanente, ceea ce le face dificilă inserarea şcolară, profesională şi întemeierea unei familii proprii. Acest lucru nu trebuie sa se mai repete, copiii de astăzi nu trebuie să devină persoanele cu handicap de mâine spune Daniel Andrei, vicepresedintele Asociatiei Romane de hemofilie.
Pacientii, medicii, parintii si sustinatorii prezenti au prezentat faptul ca asistenţa medicală a persoanelor cu hemofilie se confruntă cu deficienţe serioase:
aport bugetar national extrem de mic si sume reduse repartizate la nivel judetean, care nu acoperă necesarul real tradus prin insuficienta tratamentului acordat pacientilor cu hemofilie in Romania
accesul inegal la tratament pe teritoriul tarii (regiuni in care acesta lipseste iar in alte centre exista)
discrepante majore in ceea ce priveste repartizarea bugetara
tratamentul ``on demand`` - la cerere - (doar al accidentelor hemoragice) este neadecvat si administrat tardiv
folosirea produselor native din plasma, inactivate viral
asistenta pacientilor cu inhibitori deficitara
speranta de viata redusa
De aceea, s-a subliniat faptul ca In spatele fiecarei persoane cu hemofilie este nevoie de o echipa de sprijin si suport de natura medicala, sociala si psihologica.
Asa cum anul acesta se marcheaza aniversarea a 20 de ani de celebrare a Zilei Mondiale a Hemofiliei, sub sloganul „Impreuna, ne pasa!”, aceasta intalnire a avut ca obiectiv evaluarea situatilei din tara si stabilirea prioritatilor, asa cum pacientii cu hemofilie le considera necesare pentru salvarea propriilor lor vieti.
Unele din cele mai urgente actiuni care trebuie adoptate de Romania din perspectiva pacientilor:
a) finalizarea registrului national de hemofilie si managementul acestuia
b) definirea unor actiuni de cooperare locala, regionala si nationala in tratarea hemofiliei
c) organizarea licitatiei nationale pentru achizitia de factor
d) asigurarea disponibilitatii produsele de factor VIII / IX si tratarii persoanelor cu inhibitori din Romania
e) dezvoltarea centrelor regionale de tratament care sa preia coordonarea, diagnosticarea, tratarea, recuperarea persoanelor cu hemofilie si a unitatilor sanitare din regiunea respectiva
f) elaborarea si punerea in practica a unui protocolul terapeutic pentru pacientii cu hemofilie si boala vonWillebrand
În finalul intalnirii, s-a adoptat o nouă strategie, mult mai radicală, care prevede actiuni de strada daca in urma demersurilor ARH nu se va intreprinde nimic in vederea imbunatatirii semnificative a asistentei pacientilor cu hemofilie din Romania.
Hemofilia este o boala genetica rara, ce afecteaza un numar estimativ de 1800 persoane in Romania si aproximativ 400.000 in lume.
Nicio persoana, bolnava de hemofilie, nu ar trebui sa traiasca in suferinta, durere, disabilitate sau cu perspectiva unei vieti mai scurte.
Cu tratament, o persoana bolnava de hemofilie se poate astepta la o viata normala, intr-un mod sanatos si cu putine restrictii.
Fara tratament, acestea continua sa infrunte durerea, statea de dizabilitate, izolarea si decesul prematur. Majoritatea persoanelor cu hemofilie, care nu au primit tratament, prezinta deformari articulare, iar in cazul unui tratament neadecvat, au fost infectati cu virusul hepatic B, C sau cu virusul HIV.

Daniel Andrei Vicepresedinte ARH
Gheorghe Marcu Secretar
Mobil O745 035565

NEW HEMOPHILIA CONFERENCE

On 23 of May we organize, together with the our national association a conference. Here is the agenda. Sorry, it is in Romanian!

Optimizarea strategiei Asociatiei Romane de Hemofilie si eficientizarea demersurilor in privinta alocarii unui tratament optim persoanelor cu hemofilie

23 MAI 2009
Casa de Cultură Orăşenească
Str. Kossuth Lajos, nr. 10
Localitatea: Sfântu Gheorghe

09:00 – 09:15 Bine ati venit/Introducere
Presedinte, Asociatia Romana de Hemofilie
Presedintele Asociatiei Maghiare de Hemofilie
09:15 – 09: 35 Tratamentul pentru hemofilie in Romania si situatia actuala europeana
Conf. Univ. Dr. Daniel Lighezan, Presedinte, Asociatia Romana de Hemofilie
09:35 – 09:55 Tratamentul pentru hemofilie dinUngaria
Dr. Gábor Varga, Preşedinte, Asociaţia Maghiara de Hemofilie
09:55 – 10:15 Registrul Maghiar de Hemofilie
Dr. Szélessy Zsuzsanna, Centrul Naţional de Hemofilie, Budapesta
10:15 – 10:35 Ingrijirea hemofiliei in centrul de tratament Tg-Mures
Prof. Univ. Dr. Baghiu Maria-Despina
10:55 – 11:15 Pauză
11:15 – 11:35 Donează şi tu sânge! - Campania Asociaţiei Maghiare de Hemofilie
Radnóti Balázs, membru AMH
11:35 – 11:55 Asociatia Romana de Hemofilie – prezentare, activitati,
obiective
Gheorghe Marcu, Secretar, Asociatia Romana de Hemofilie
11:55 – 12:15 Perspectiva parintilor privind tratarea hemofiliei
Kiss Laszlo – Asociatia Romana de Hemofilie
12:15 – 12:35 Importanta unei retele functionale pentru hemofilie
Daniel ANDREI, Vicepresedinte, Asociatia Romana de Hemofilie
13:00 – 14:00 Prânzul
14:00 – Discutii în privinţa strategiei ARH
17:00 – Concluzii

WORLD HEMOPHILIA DAY

It is a very important event in our life. We celebrated it in Bucureşti together with people coming from all over Romania. This day it means a lot of happyness, because we are together, but also mourning because 7 people from our community dyed last year because of bleeding.

The perspectives are not good: the factor supply will go down from 0.5 I.U./capita to 0.3 I.U./capita! And we know how much was the 0.5 I.U./capita: almost nothing!
I think we have to change our strategy. That's why I was very happy that the Asociaţia Naţională a Hemofilicilor din România and the Asociaţia Română de Hemofilie, the two sister associations, were celebrating together.
I hope that there will be further collaborations too, because

TOGETHER, WE CARE!

The celebration was organized on 14.04.2009.

HEMOPHILIA CONQUERS MT. PIATRA CRAIULUI

On Sunday (12.04.09) I decided with my friend, Varga Gábor, to visit Prăpăstiile Zărneştului which is a canyon in Mt. Piatra Craiului. You can go very close to the canyon by car. So It wasn’t a problem for Gábor to visit it even if he suffers of severe hemophilia. We enjoyed the trip very much, we did a lot of photos, but when reach the end of the canyon -surprise!- Gábor starts to climb a path which goes to Curmatura Cabin. The Mt. Piatra Craiului is not recommended for ordinary men, but Gábor isn't’ an ordinary man either. It’s true: we stopped a lot for rest, and we reached only the cabin (1470m), but I think we won!
Using Jack Finn’s saying:’’bloody can do it’’!

Photos: http://picasaweb.google.hu/kkisslaci/Kiralyko12042009#
More info about Mt. Piatra Craiului:
http://www.cabana-curmatura.ro/
http://www.pcrai.ro/engleza/parcul_istoric.html

Christmas

Yesterday I went to donate blood.

It was the first time, so I was very scared, and they took about 450 ml, but after that I was feeling great!

I was thinking that probably this will help a life.

It's Christmas. Please think to the others, who are in need!

Photos: http://picasaweb.google.hu/kkisslaci/Blood?authkey=ibq_El8yB2c#

National Meeting in Buzias

On 29th of November was organized the meeting of our Romanian Hemophilia Association. Our host was the Clinical Medical Center Cristian Serban of Evaluation and Rehabilitation for Children and Adolescent with Type 1 Diabetes Mellitus and Hemophilia.

It was a national meeting, so people come from every corner of the country.

In the beginning Mr. Andrei Daniel our vice-president presents all the activities of the national association. It was a very rich day. There were many campaigns, conferences and found rising activities.

Then Mrs. Prof. Dr. Margit Serban tells us about her impressions toward our association. She retired from the presidency a year ago.
She said that we are on a right path, but she warns about the possible dangers too.

Then there was a free discussion about our problems and future projects.
I am very happy that everybody approved the twinning project with the Hungarian Hemophilia Society. I know that we shall have a lot of work but I think that this will be a new possibility to fight for those who suffer of hemophilia.

At the end I presented the Help for Hemophilia campaign and its results.

Before we went home, everybody agreed that 2008 it was one of our best years of activity.
Photos from the meeting and fom my travel: http://picasaweb.google.hu/kkisslaci/Buziasnov29?authkey=RbaTgr-lmJI#