If my message was was poorly translated and I spoke English. I would write the person and ask What did they send because it was not understood. This to me is why we dont know what is going on other countries cause of loop holes. This is red tape the good people have to take out the trash on. How long has the Fabry Disase been known? My family feel threw the cracks one time and I decided not to let it happen again. This is why I tell people get off Facebook and do your research. This is example why I tell people; They Need to Voice for Themselves. If I send you a personal message and You are Rude to Me it will be Put Out There. I hate Fabry Disease just as much as everyone else. The disease is Rude enough does not mean Fabbers have to be Rude to each other. Sorry, he doesnt have Fabry. But he speaks for Fabbers. I care about the Future of Fabry. This is; Why people are not on the same page. This why people dont talk to each other. This is why you didnt get an invitation to events because someone can be a smart! I forward all my stuff to each person on the Fabry Members FIN NETWORK. These are peole in Charge of your health. I am going to forward this message. No One should be this rude. I will not say, I am sorry I sent the invite because this man doesnt speak for all Denmark Fabbers but I am sorry for the ones he does represent. This is a problem. I dont know what Leadership he thinks he holds but I am thankful it is not my life nor my children. This the reply I got from Denmarks Fin Network. I will nice in what I want to say but I will say he needs to forced to removed because Fabry is not NonSens! And just because his wife cant walk does not mean the other 74 patient would want too. I am tired of ruddiness. I was kind and took my time and was nice I tried by Google Translator. My Bad. I wish Hannah had those great choices for medication. Hello Ann Thank you for your mail. However, it is a very bad translation, you have sent me, so a lot of it is just nonsens. Denmark is a small country, And I know about 75 patients are in treatment at our head hospital, Rigshospitalet, in Copenhagen. However, in the town where I live, my wife is the only Fabry patient. I am not a patient myself, but I try to help our Fabry organization, and therefore I am the treasurer in the Danish Fabry Organisation. I can see your intension is to let all of us walk in a park or the forest on a certain day. However, my wife is not able to walk more than more than 200 metres. As medicine we here in Denmark have Fabryzyme, Replagal and as a trial also Miglastat in the form of pills from Amicus Therapeutics. I really hope Miglastat will be a success, because it is must easier to handle as the other medicaments. Best regards from Mrs. Ask a Fabber if Fabry is NONSENSE? (Ann) I am going to write Fin Network. I want say what I want to say. I will be nice and say, I am praying for the Fabbers of Denmark. And just because I am a different culture will be an excuse. Cultures are not rude it, Is the people that make up a Culture. People of this style Mind Frame should not be over, Nothing! This is one of the Fin Network Representative. I am going say it for my scrap book! The other 74 Patients in Denmark are more then Welcome to Join Our Walk cause it sounds like they need Awareness and someone Kind. Ann Gore-Gonzalez of the M.O.M.s & D.A.D.s Against Fabry! Fabry Awareness Walk-In-The-Park and U.S.A. Fabry Awareness Club
Posted on: Wed, 30 Oct 2013 00:12:17 +0000
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