Agnieszka Czarny i jej dzieci potrzebują pomocy. Chorują na zespół VHL

  • 02.12.2019, 01:18
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Agnieszka Czarny i jej dzieci potrzebują pomocy. Chorują na zespół VHL fot. dost.
Agnieszka Czarny ze Swobnicy (gm. Banie) ma 36 lat oraz troje dzieci, które od dawna wychowuje samotnie. Oliver ma lat 14, Wiktoria - 13, Karol osiągnął już pełnoletność. Pani Agnieszka choruje na nieuleczalną genetyczną chorobę nowotworową – naczyniakową - Zespół von Hippel-Lindau. W Polsce żyje około 1000 osób z tą chorobą.
-Moje problemy zaczęły sie w 2010 roku, kiedy bez przyczyny zaczęła boleć mnie noga w kostce oraz pojawił sie obrzęk. Nastepnie idąc zaczęłam wywracać się na drodze. Wizyta u lekarza potwierdziła najagorsze - guz wewnątrzrdzeniowy na poziomie C7-Th2, który trzeba operować. Po operacji od 10.08. 2010 r. do 14.09.2010 spędzilam w klinice Neurochirurgii w Szczecinie z niedowładem kończyn dolnych oraz infekcją dróg moczowych.
 
Kiedy wylądowałam na wózku, miałam zaledwie 28 lat i troje malych dzieci. Serce mnie bolało nie dlatego, że byłam niepełnosprawna, ale że nie mogłam uczestniczyć w życiu moich dzieci jak dawniej. To one pomagały mi w codziennych czynnościach. One były moim wsparciem, a przecież powinny cieszyć się beztroskim dzieciństwem.
 
Nie ma niestety możliwości leczenia przyczynowego zespołu von Hippla-Lindaua. Podstawę terapii stanowi chirurgiczne usuwanie guzów. Małe lub wolno rosnące naczyniaki nie wymagają leczenia, a jedynie obserwacji. Natomiast duże i szybko rosnące naczyniaki albo takie, które wywołują objawy, wymagają operacyjnego usunięcia, ewentualnie radioterapii. Obecnie jestem również po usunięciu guzów oraz torbieli z prawej nerki.
 
Teraz czeka mnie operacja usuniecia guzków z siatkówek obydwu oczu, a nastepnie z lewej nerki. Guzy sa rownież w móżdżku, a dokladnie jest ich 7 oraz na powierzchni rdzenia na wyskości C4.
 
Opieka nad rodzinami z VHL polega na zastosowaniu programu badań profilaktyczno-diagnostycznych u osób z grupy ryzyka, który ma na celu wczesne wykrywanie i leczenie zmian nowotworowych. Zespół charakteryzuje się zwiększoną predyspozycją do nowotworów nerek, ośrodkowego układu nerwowego, szczególnie móżdżku, nadnerczy i siatkówki. Stąd tak wielka rola okresowych kontroli i badań obrazowych. Rokowanie u pacjentów z VHL jest ściśle powiązane z wiekiem postawienia rozpoznania i częstością wykonywania okresowych badań. Nieleczony VHL może spowodować utratę wzroku lub trwałe uszkodzenie mózgu. Przy wczesnym wykryciu i leczeniu rokowanie jest znacznie lepsze. Śmierć jest zwykle spowodowana przez powikłania guzów mózgu czy raka nerki.
 
Muszę walczyć nie tylko dla siebie, ale przede wszystkim dla moich najmłodszych dzieci, u których - jak się okazało - również zdiagnozowano zespół VHL. Do tej pory miały tylko laserowo usuwane naczyniaki w oczach. Wiktoria czeka na wyniki rezonansu ciała. Młodszy syn czeka na operację guza móżdżku której termin ma na grudzień.
 
Do tej pory z pomocą mamy wiązałam koniec z końcem i nie prosiłam o pomoc, choć bywało różnie, bo nie przysługuje mi renta i utrzymujemy sie ze skromnych alimentow, rodzinnego, świadczenia pielęgnacyjnego i zasiłku stałego z opieki. Brak sił oraz funduszy zmuszają mnie do założenia zbiórki. Bez waszej pomocy nie poradzę sobie z codziennymi wydatkami, dlatego proszę wszystkich o jakąkolwiek wpłatę oraz udostępnianie mojego cichego wołania o pomoc.
 
Dozgonnie wdzieczna Agnieszka z dziećmi
 
DIAGNOZA: Zespół von Hippel-Lindau
CEL zbiórki: zakup leków, terapii, pokrycie kosztów zwiazanych z transportem do lekarzy i na badania, turnus rehabilitacyjny a także zakup pionizatora.
KWOTA do zebrania: 5 000 zł
 
Link do zbiórki na stronie pomagam.pl:
 
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