Angry so angry . Hurting so bad . My heart just does not seem like it can take anymore. Not my daughter too! It is not fair to have a disease that there is not one management tool that works. . No money from the government . People with rare diseases just are not as important . Which is exactly what Mr. Richard Burr said to me. I know cancer and diabetes are bad but can we not share in the funding. We only wanted a little bit. What do they think will happen to Jeff after so many years of being anemic . Organs cannot take but so much! Do they think people with HHT dont die from it. They have no clue. I am stomping my feet. They are not nosebleeds either they should be call hemorrhages. We have now gone to a herb that the Chinese used in Vietnam to stop bleeding. I fought so hard to get that funding and cant even get it out of committee and it is a dead bill not. Mad yes for all HHT patients. Need you prayers.
Posted on: Wed, 31 Dec 2014 14:31:05 +0000
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