Hello members and fellowers,
My name is Reyha K-10 and i'm living in the Netherlands. I have serious problems with several heavy healthissues, like bonegrowth and necroses at bone-ends (In NL they called it anything but thalassemia, because they didn't know this disease exists). I also was easy tired and diagnosed since i'm 3 years old with exercise-astma.
A few years ago i suffered neckhernia. My neurologe said than it was thalassemia, but she refused to send me tru to an internist. Google wasn't far enough with information, so i wasn't very impressed by the name. A little anaemia once and a while, not for me i thought.
Now, my fourth joint replacement surgery later (because of damage at ends; both hips are replaced already AND my neckhernia is fixed by plate) and no doctor in the Netherlands to find because the don't do surgery under 50 years old (crazy protocol, thankfully for the possibility to go to belgium, but anyways) and after a long traject, i found a belgium orthopedic, who saw my latest x-rays and freakt out, because of the many cystes in my shouldersockets (both sides). He has looked up for me if the cystes could be caused by thalassemia and the answer for all my problems so far is: YES. Surgery was at the 1st october.
For the many many years i stumbles with my healthissues and doctors where telling me for a long time that i was hypochondric and psychical crazy and blew out my handicap in great proportions for any attention.
this week i went to my own doctor (huisarts) and now i'm waiting for results; what type precisely and what treatment? I have to wait for another 10 days and listening to my body i suffer from sickles right now (hb test = 7.0), but i don't dare to go back, before the results are in. I called the EHBO here, but they just said there is nothing to be worrie about and that i can wait 10 more days. Strange because i read other urgent treatments elswhere. I truely hate it when doctors are not taking this illness serious.
I'm more than nervous, because i do realize now how drastic this disease is. And i'm more than thankfull for the time that is given to me, considering the low age of death. I do hope to help others and i hope for dutch medical world to be aware of this horrible disease. So they wo'n't send people away with, it's between your ears, before sicklecel is excluded of cause.
And i hope that there will be more years adding to my age now as i wish that for anyone who suffers any form sicklecellanemie.
hopefully i can cotribute some knowledge and comfort for anyone in need.
greetings Reyha from NL