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Showing posts from May, 2011

Subject: Kindness Despite Being Ill Part 2

Dear APF Members,

I wanted to share a thought when we have bad days and we have pets, do we
ignore them, love them, and pay any attention to them?  Well I have three
dogs and usually I don't feel my best.  They each have their own
personalities, funny things they do but if we don't feel good we may at
times put them aside.  They can sense when we don't feel right, remember
that we never need to get upset with them because all they want is love and
affection when we don't feel right and our approval just as we seek it from
our family and friends. In return by showing this kindness it brings all of
us happiness and some measure of contentment.

Show kindness through loving animals and the living world. Loving animals
and caring for pets is kindness in action. Nothing compels you to care about
beings of another species, especially in a day and age where the tools of
human domination are so powerful. And yet, the very act of loving an animal
and respecting the animal for i…


DAY AT THE FDA with Mike Kenworthy,Ph.D and Matt Johnson

I was part of the Afamelanotide trial last summer and was fortunate enough to have received the real thing. Unless you have EPP, I cannot explain what a miracle that was. But I did get the chance recently to do just that at the FDA Office of Orphan Diseases. Another fellow EPPer, Matt Johnson, joined me. In my 62 years I had never met anyone with EPP outside of my family (I have two cousins with EPP). That was an experience in itself. Those of us with EPP know that we can never explain to someone without EPP what it is like, but listening to Matt Johnson was like reading my own thoughts. Matt and I spoke a couple of times during telephone conferences before we actually met at the FDA in Silver Spring, Maryland. Although our session was scheduled for 10:30am, we were asked to come early to meet with Dr.Timothy Cote, the head of the Office of Orphan Diseases. I arrived just before 9am and Matt was close behind. Dr. Cot…


Since Panhematin has beeen on the news for the last month, I thought I would tell you my first expereince with the drug. When I took it so many years ago, it had not been FDA approved and subsequently becem the first ORPHAN DRUG.

That story will come at a later date.

. My doctor at NIH, Dr. Lamon , arrived at my room . I was wide-awake and ready for what I hoped would be good news. Dr. Lamon said he thought that I might benefit from treatments with infusions of hematin; however, the FDA had not yet approved heme therapy for the acute Porphyrias. Evidence from years of prior research indicated that hematin was effective and might enhance my recovery.
Since I had been very ill for quite some time, Dr. Lamon warned me that hematin was sometimes not as effective when given far along in an attack as I was then. Having never been one to stand and wait for anything, I certainly didn’t want to think more than that moment to tell him that I was willing to try the hematin as soon as poss…