24 años y Sindrome de Li-Fraumeni
Donation protected
Hace menos de un año, a mis 23, empecé el tratamiento de quimioterapia para mi cáncer de pecho, el más fuerte que existe. Siete meses después me sometí a una doble mastectomía radical y una linfedectomía. Me realizaron un estudio genético y me diagnosticaron Síndrome de Li-Fraumeni: Una mutación en el gen TP53 que en resumen para que todos lo entendamos hace que tenga y vaya a tener entre 90 y 100% de probabilidades de padecer cáncer otra vez. Este síndrome es heredado (mi abuelo falleció de cáncer de estómago, mis dos tias de cáncer de pecho, con 18 y 24 años y mi padre falleció hace dos años por una brutal metástasis). Está considerada una enfermedad rara. Quiero pedir ayuda porque por culpa de esta enfermedad, lo estoy perdiendo todo: Cobro una pensión de orfandad de 283,20€ al mes, vivo independizada y más de la mitad de ese sueldo va en alquiler y facturas, no he podido cobrar el paro porque unos días antes de vencer los mínimos días que se necesitan para tener derecho a ello, tuve que dejarlo todo a vida o muerte para operarme (aunque decidieron finalmente darme primero la quimioterapia), esa ayuda me la quitan en Junio, y me tengo que pagar yo misma los desplazamientos en autobús o tren a la capital a la que me manden para realizarme (ya de por vida cada seis meses) Resonancias magnéticas y TACs entre otros. El Estado (seguridad social) no se hace cargo del transporte en ambulancia porque puedo andar y valerme por mi misma, no me dan ningún tipo de ayuda, para comer o para ayudarme con el alquiler, ni si quiera información sobre cómo puedo manejar todo esto. No se cuando podré volver a trabajar ya que ahora me van a volver a tratar con quimioterapia durante varios meses. No me gusta pedir ayuda y no quería recurrir a algo como esto pero estoy desesperada y ya no sé qué hacer. Esta enfermedad me ha arruinado la vida. Quisiera recaudar, por lo menos, para cubrir los gastos de transporte para las pruebas, he gastado todos mis ahorros en transporte durante estos últimos meses. Gracias por leer todo esto. Si alguien con Li-Fraumeni me está leyendo, o conoce a alguien que la tenga, estaría muy agradecida de que se pusiese en contacto conmigo para poder hablar sobre esta enfermedad y cómo llevarla.
In english:
Less than a year ago, at 23 years old, I started the chemotherapy treatment for my breast cancer, the strongest there is. Seven months later, they presented me with a radical double mastectomy and a lymphedectomy. They diagnosed me with Li-Fraumeni syndrome: A mutation in the TP53 gene, which increases my chances to have cancer again between 90 and 100%.This syndrome is inherited from my family (my grandfather died of stomach cancer, my two aunts died of breast cancer at the age of 18 and 24; and my father died two years ago due to a brutal metastasis). It's considered a rare disease. I want to ask for help because of this disease I'm losing everything: I collect a pension of 283.20€ per month, I live independently and more than half of that salary goes to the rent and bills. I can't work right now and I can't get the pay for unemployed because when I was about to done the minimum days The State requires to get that payment, I was called urgently for the chemoteraphy. The money The State is giving me, because I'm orphan, ends this June (The 283,20€ pension),I have to pay by myself the transport to the capitals to get the tests done (resonances, CATs...) which even get over 80€. The State considers that with the 283,20€ I can pay rent, bills and by food, and even pay the travels. Thing that is IMPOSSIBLE, and they don't give mme any type of economical help. I don't know when I could start to work again because of Li-Fraumeni, they couldn't give me radioteraphy and they will start to give me chemo again. I dont like to ask for help and even less to strangers, but I don't know what more I can do. I want to collet at least money for the transport, because I spent all my savings in trains and buses. If there's here someone with Li-Fraumeni syndrome who is reading this, please contact me, I would love to talk with someone whois going through this too. Thanks for reading and caring when even my State doesn't care for me.
In english:
Less than a year ago, at 23 years old, I started the chemotherapy treatment for my breast cancer, the strongest there is. Seven months later, they presented me with a radical double mastectomy and a lymphedectomy. They diagnosed me with Li-Fraumeni syndrome: A mutation in the TP53 gene, which increases my chances to have cancer again between 90 and 100%.This syndrome is inherited from my family (my grandfather died of stomach cancer, my two aunts died of breast cancer at the age of 18 and 24; and my father died two years ago due to a brutal metastasis). It's considered a rare disease. I want to ask for help because of this disease I'm losing everything: I collect a pension of 283.20€ per month, I live independently and more than half of that salary goes to the rent and bills. I can't work right now and I can't get the pay for unemployed because when I was about to done the minimum days The State requires to get that payment, I was called urgently for the chemoteraphy. The money The State is giving me, because I'm orphan, ends this June (The 283,20€ pension),I have to pay by myself the transport to the capitals to get the tests done (resonances, CATs...) which even get over 80€. The State considers that with the 283,20€ I can pay rent, bills and by food, and even pay the travels. Thing that is IMPOSSIBLE, and they don't give mme any type of economical help. I don't know when I could start to work again because of Li-Fraumeni, they couldn't give me radioteraphy and they will start to give me chemo again. I dont like to ask for help and even less to strangers, but I don't know what more I can do. I want to collet at least money for the transport, because I spent all my savings in trains and buses. If there's here someone with Li-Fraumeni syndrome who is reading this, please contact me, I would love to talk with someone whois going through this too. Thanks for reading and caring when even my State doesn't care for me.
Organizer
Marta Vandraren
Organizer
Miranda de Ebro, CL