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It's been a couple of months now, and I'm pleased to say I am tolerating the new drug, Carfilzomib, brand name Kyprolis, very well. I'm now on the 'Dara' (…
Losing one's immune system is a serious consequence of a stem cell transplant, putting the body at risk for viral, fungal, and bacterial infections. Rebuilding the…
There are times when those afflicted with amyloidosis need assistance - a caregiver. In some instances, such as a stem cell transplant (SCT), the treatment is so…
The Adam Gardiner Fund Incorporation (AGF) raises money to support the Westmead Amyloidosis Centre in the treatment of amyloidosis, a group of diseases that cause a…
If you have been diagnosed with a rare disease, I'm sure that at some point you have met a nurse or a doctor who has never heard of your condition. Doctors and…
In patient news, I know of one patient who had a combined liver and kidney transplant in 2018, and as I mentioned in the previous blog post, the third liver-only…
Recently I saw a movie with Robert Redford, "All is Lost". Takes me back. Before we were married my future wife and I charted a bare boat Morgan 29' sloop in the…
Rare Disease Day takes place every year on the last day of February. The purpose is to raise awareness about rare diseases and their impact on patient's lives. Most…