Why me? An answer at last!by
I recently stumbled upon a site for atypicalHemolyticUremicSyndrome (aHUS), the disease that I have. It is such a rare disease - there are only about 300 people who have this disease in the US. A very small part...
Atypical HUS Patient conference at Newcastleby
and their family on atypicalHemolyticUremicSyndrome on Saturday, June 11th. This is a great initiative by Dr... in atypical HUS and it is great that he is organizing this conference. So little is known about this disease...
The little boy with atypical HUSby
went through me. HUS. HemolyticUremicSyndrome. Where the body's defense mechanism against foreign.... No other symptoms."
"Oh no", I thought to myself. This was the atypical form. The exact same thing...
Hopefully, some day...by
A video of a young little boy diagnosed with AtypicalHemolyticUremicSyndrome, the disease that I have, being given the wonder drug, Eculizumab
Tomorrow is Rare Disease Dayby
I have a disease called AtypicalHemolyticUremicSyndrome (aHUS). This disease is classified as an Ultra Rare Disease - less than one in a million adults are estimated to be affected. The problem...
Today is Rare Disease Dayby
I have atypicalHemolyticUremicSyndrome (aHUS). In the US, there are only about 300 people... of a life without dialysis.
Atypical HUS is what is officially called a 'rare disease'. Today, February...
Soliris - do we really need to wait?by
My primary kidney disease is atypicalHemolyticUremicSyndrome (aHUS). This is a very rare disease in adults. It is more common in children. The problem with rare diseases is that they do not...