Hey everybody. I joined this site a while back as my boyfriend has Hughes Syndrome. He was diagnosed with it 1 year ago and has blood clots on the lungs. He gets very out of breath and his heart beats very fast to compensate for his lungs not absorbing enough oxygen. He has been on Warferine to treat this. but sadly after one year the blood clots have not reduced or gone away. He has recently had the news that his brain is getting less oxygen and causing damage to brain cells. He has been asked to sign a form allowing them to prescribe dangerously high levels of warferine now to battle this.
Please has anyone been in a similar situation to offer advice as my boyfriend is at the point of feeling like he is not getting any better and is really down..