English & Romanian version
I am Livia Beju, 35, and I’m living a
drama that is putting my life in danger every day.
I’ve
made this campaign hoping that someone would want to help me in any possible
way. My present situation is on the edge because of Marfan Syndrome (more about it: http://en.wikipedia.org/wiki/Marfan_syndrome) an awful
disease which is getting worse and worse because I can’t afford a monthly
treatment, better investigations or a decent living standard.
The pain is now a way of life for
me. My only hope stays in your help and I truly hope that someone would hear
and help me through my battle with this disease, that grew in my body from the
time when I was 8, when it become active, as a result of the ecologic disaster
from Chernobyl. Until now it took me all my life resources, altering in 27
years almost my whole body.
It’s a genetic and rare disorder of the
connective tissue (altering most of all the heart, the lungs, the bones, the
eyes and the spinal cord). I have over 50 diagnosis and because it’s a severe
form, which is not monthly verified, my life is at risk in every moment.
Romanian doctors are overwhelmed by this situation, my life expectancy
was 20 years, and now at 35 they consider my case a miracle. Here in Romania we
don't have integrated medical services, and the doctors who know something
about this disease are very rare, or very expensive. There is no cure for this
disease, but there are cures for the associated diseases, which it’s useless
because I can’t afford any monthly treating program. Because of that, I take
pain killers almost daily, drugs with morphine, pills that ease my pain for at
most 3 or 4 hours. I take them only when I can’t even breathe from the pain I
have, because I’m not allowed to take more than one for day due to the chance
of having a heart attack. The morphine and the pain got me exhausted and
because of my weak heart and this very tiring condition I’m having a daily risk
to have an aortic dissection, which regarding all the medical problems, would
only mean death. I know that if I’ll only have a good living standard, I would
be better. I really hope that it’s not too late for me.
I don’t have anyone to help me, I didn’t
had responsible parents, the only ones who ever helped and supported me ‘till
now were my blind uncle and my blind grandmother, but my uncle died 2 years
ago, and my grandmother now has bigger health problems. My parents are dead, my mother was diagnosed with Marfan Syndrome only
after her 40, too late to help the body, dying shortly afterwards, of an aortic
dissection. I
want so much to live, at least one or 2 years more, but the most of all I wish
to improve my daily subsistence and to be able to afford my treatment, to be
relieved somehow from this constant pain which almost dehumanized me. I got to
not knowing which is a normal day, which is only agony. I kept hoping I could
help myself alone, but my last two years was a nightmare.
Due to a
precarious childhood and a terrible adolescence (with constant chaos and
stress, beatings, poverty, mistreatment and abuse) the disease has spread
inside my body, currently taking all my resources. I feel that I still have
something to live for, even if my life meant just pain in any form, for years.
I’m struggling for a better life, hoping for a few extra years without pain. I
don’t drink, I don’t smoke, I eat only what's cheaper, I do not have kids, I
chose not to give this terrible disease on, I’ve chosen to give him life in the
only way that I could, that is to not give birth to him.
Even when I
was working with 40% working capacity, it was ok that I could worked, now it's
just pain and agony. I have complications to eyes (glaucoma), bones, lungs and
spine, I have blindness moments, I have moments when my hands are shaking, and
I know that I can end up in a wheelchair since I cannot afford the monthly
required medication. I’m already having problems with movement, my heart is
weak and I get tired really fast. It would have been OK, I would have go through all this if I had
any help, if I had a competent medical system to help me, integrate me, a family to support me, a
normal life. I’m used with very little, but the present situation is under any
limit of survival for someone in my situation. I come to a point where every day without any help is critical!
I need help,
I need hope, I need not to pray every night to wake up the next day, I need to
go to competent investigations, where doctors would tell me a real situation
and give me concrete solutions, where I won’t need to teach them about this
disease and be their “lab rat”, as I was since I was little. I need to go to
doctors who have worked with cases of Marfan and who will not look at me like a
miracle because I’m still here, as the romanian doctors do, being totally
overwhelmed by my condition.
I’m asking
that anyone who finds a piece of humanity in him to help me to assure at least
1 or 2 years of peaceful and painless life and to not have such big daily
risks. I cannot bear this all alone, I'm terribly tired. I cannot stand the
pain and agonizing days without hope of a better life for me. I'm tired of
crying on my own of pain and despair, I'm tired of fighting by myself, I am
tired of looking for a solution and having no hope from nobody. Because I still
want to live. Any help can extend my life, it can offer me a different reality.
A reality that I dreamed of for many years without morphine, painless, with a
daily living aid and support and monitorization by competent physicians. Without the major risks, like having an
aorta dissection, dying, being blind or in wheelchair, all cases being
irreversible for me, and awful in the situation where I have no help from
anyone. Please help me, so I can know that I'm not alone in this!
I need this amount of money to go to better investigations outside
of Romania and to provide monthly support and monitored treatment in my attempt
to delay the worsening of my disease even for 1 or 2 more years of life. I’m
tired of not having chances in my life. I know that there
are products that can help my heart, I know that there are treatments that can take
my pain easy and I would not need to take morphine pills anymore, I know I can get
to improve my life and my daily living and go out from this chaos, but for all
that I need money, and I have only hope, which is also very little.
Please help me before it's too late. Give me a chance to be
better, to fight for more time, and to delay that this terrible illness threats
my life even more than now. You can make this difference in my life. This
campaign is my cry for help. My life is now in your hands.
Thank you so much!
If you want to donate directly in a bank account you can find all the details here:
https://liviabejublog.files.wordpress.com/2015/...
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Sunt Livia Beju, am 35 de ani si traiesc
o drama ce-mi pune zilnic viata in pericol. Am facut aceasta campanie in
speranta ca cineva va dori sa ma ajute in orice fel posibil. Situatia prezenta
este la limita si se datoreaza Sindromului Marfan (mai multe detalii: http://ro.wikipedia.org/wiki/Sindrom_Marfan), o boala groaznica, ce
evolueaza de la luna la luna din cauza faptului ca nu-mi pot permite financiar
un tratament lunar, controale competente sau un trai minim necesar adecvat
situatiei.
Durerea continua a devenit un mod de
viata. Singura mea speranta sta in ajutorul vostru si sper enorm ca cineva sa
ma auda si sa ma ajute in lupta mea cu aceasta boala, afectiune care imi macina
organismul de la 8 ani, cand s-a declansat in urma dezastrului ecologic de la Cernobal. Pana acum mi-a luat toate
resursele de viata, in 27 de ani afectandu-mi aproape toate organele. Este o
boala rara, genetica, ce ataca tot tesutul conjunctiv din organism (afectand in
mod principal inima, plamanii, oasele, ochii si maduva spinarii). Am peste 50
de diagnostice si pentru ca este o forma severa, care nu este monitorizata si
controlata lunar, in fiecare clipa viata mea este la risc.
Doctorii din Romania sunt depasiti de
situatie, speranta de viata data mi-a fost de 20 de ani, iar in prezent, la 35
de ani se uita la mine ca la un miracol. La noi nu exista un sistem medical
integrat, iar doctorii care stiu ceva despre boala asta sunt fie foarte rari,
fie foarte scumpi. Tratament nu exista pentru boala de baza, iar pentru cele
asociate bolii de baza degeaba exista tratament, pentru ca nu-mi permit financiar
un program lunar sustinut. Din aceasta cauza, iau aproape zilnic pastile cu
morfina pentru dureri, care ma linistesc cel mult 3-4 ore, si acelea abia
atunci cand nu mai pot respira de durere, pentru ca nu am voie sa iau mai mult
de 1/zi, existand risc de infarct. Morfina si durerile ma obosesc enorm si
datorita inimii slabite si starii de oboseala accentuata risc in fiecare clipa
sa fac disectie de aorta, care in cazul meu, din cauza tuturor complicatiilor
ar duce la deces. Stiu ca daca as avea un nivel de viata sustinut, as putea fi
mai bine. Sper insa tare mult ca nu e prea tarziu si pentru mine.
Nu are cine sa ma ajute, nu am avut
parinti responsabili, singurii care m-au ajutat si m-au sustinut pana acum au
fost unchiul meu orb si bunica nevazatoare, dar unchiul a murit acum 2 ani, iar
bunica are si ea probleme mari de sanatate. Parintii imi sunt morti, mama mea a
fost diagnosticata cu Sindrom Marfan abia dupa 40 de ani, prea tarziu pentru a
mai putea ajuta organismul, murind la scurt timp dupa aceea, in urma unei
disectii de aorta. Imi doresc enorm de mult sa mai traiesc, macar 1, 2 ani in
plus, dar cel mai mult imi doresc sa-mi imbunatatesc traiul zilnic minim si
sa-mi pot asigura tratamentul, sa scap astfel de durerile astea care m-au
dezumanizat. Am ajuns sa nu mai stiu care e zi normala, si care e agonie. Am
tot sperat ca ma voi putea ajuta singura, dar ultimii 2 ani au fost un cosmar.
Datorita nivelului de viata precar, a
unei copilarii si a unei adolescente groaznice (cu haos si stress continuu,
batai, saracie, maltratari si abuzuri) boala s-a raspandit in organism,
luandu-mi in prezent toate resursele. Simt ca inca mai am de ce sa traiesc,
chiar daca viata mea inseamna de ani buni doar durere in orice forma, lupt sa
fie mai bine si pentru mine, macar cativa ani in plus, fara durere. Nu beau, nu fumez, mananc doar ce-i mai
ieftin, nu am copii, am ales sa nu dau boala asta groaznica mai departe, am
ales sa-i dau viata, prin singurul mod in care puteam, adica sa nu-l nasc.
Chiar si cand munceam cu 40% capacitate
de munca era ok, ca puteam munci, acum e doar durere si agonie. Am complicatii
si la ochi, oase, plamani si coloana vertebrala, am momente cand mi se ia
vederea, am risc de orbire, imi amortesc mainile si sunt pasibila sa ajung in
caruciorul cu rotile, tot pentru ca nu-mi pot suplini medicatia lunara
necesara. Deja ma deplasez foarte greu, inima mi-e slabita, obosesc din ce in
ce mai repede, ar fi fost ok toate, si le-as fi dus, daca aveam un ajutor, daca
aveam un sistem medical competent, care sa ma ajute, sa ma integreze, o familie
care sa ma sustina, un trai normal cat de cat. Sunt invatata cu putin, dar
situatia prezenta e sub orice limita de supravietuire, pentru cineva in
situatia mea. Am ajuns la un punct in care fiecare zi fara vreun ajutor este
critica!
Am nevoie de ajutor, am nevoie de
speranta, am nevoie sa nu ma mai rog in fiecare seara sa ma trezesc a doua zi,
am nevoie sa merg la controale la medici competenti, care sa-mi spuna o
situatie reala si sa-mi dea solutii concrete, unde sa nu trebuiasca sa-i invat
eu pe ei despre boala asta si sa ma transforme intr-un cobai, asa cum am fost
de mica, plimbata prin toate spitalele din Bucuresti. Am nevoie sa merg la
medici profesionisti, care au mai lucrat cu cazuri de Marfan si care nu se vor
uita la mine ca la un miracol ca inca exist, asa cum fac cei din Romania, total
depasiti de situatie.
Rog pe oricine gaseste in el o farama de
omenie sa ma ajute sa-mi asigur macar 1 sau 2 ani de liniste si de viata in
plus, fara dureri si riscuri zilnice atat de mari. Nu mai pot duce singura tot,
am obosit crunt. Nu mai suport durerea si zilele pline de agonie si fara
speranta de mai bine si pentru mine. Am obosit sa plang pe strada de durere sau
disperare, am obosit sa lupt de una singura, am obosit sa caut solutii si sa nu
am nicio speranta de nicaieri. Pentru ca inca mai vreau sa traiesc. Orice
ajutor imi poate prelungi viata, imi poate oferi alta realitate. O realitate pe
care o visez de ani buni, fara morfina, fara dureri, cu un sistem de ajutor si
un trai zilnic sustinut si monitorizat de medici competenti. Fara riscurile
majore, de a face disectie de aorta, a muri, a orbi sau a ajunge in carucior cu
rotile, toate ireversibile, si groaznice in situatia in care nu am niciun
ajutor de la nimeni. Te rog ajuta-ma sa stiu ca nu sunt singura in asta!
Am nevoie de acesti bani pentru a merge
la controale in afara si sa-mi pot asigura un tratament sustinut si monitorizat
lunar in incercarea de a amana inrautatirea bolii macar pentru 1 sau 2 ani de
viata, in plus. Am obosit sa nu am sanse in viata mea. Stiu ca exista produse care imi pot
ajuta inima, stiu ca exista tratamente care imi iau durerea cu mana, si n-ar
trebui sa mai iau pastile cu morfina, stiu ca pot ajunge sa-mi imbunatatesc
traiul si hrana zilnica si sa ies din haosul asta, dar pentru toate astea
trebuie bani, iar eu nu am decat speranta, si aceea foarte slaba.
Te rog ajuta-ma pana nu e prea tarziu.
Da-mi o sansa de a fi mai bine, de a lupta pentru mai mult timp, de a amana ca
aceasta boala groaznica sa imi puna si mai mult viata in pericol. Tu poti face
diferenta asta in viata mea. Aceasta campanie este strigatul meu de ajutor.
Viata mea este acum in mainile tale.
Iti multumesc din suflet!
Daca doresti sa donezi direct in conturile bancare gasesti toate detaliile aici >> https://liviabejublog.files.wordpress.com/2015/...