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Showing posts from June, 2011

A Day At The FDA

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. Cote had just returned from Israel two day prior and was sick…


I would like to let you all know how wonderful the Porphyria foundation has helped me.I always love to help in any way I can and I think most of you are that way to, but have you asked yourself what is your limit?Do you know you limit?Do many people pull you in all different directions?When we feel great or good, we pack everything that needs to be done or want to do all in one day, reminds me of going on vacation to see and do everything in one trip because you may not get back there. You all know what I mean.Many people that have a disease wear T-shirts, bracelets, raise money, run races and so much more.I see so many people get depressed and have low spirits because with Porphyria there are different types that affect us in so many ways and does affect our everyday lives.So if you find yourself in that downward state what can you do to be happy? ·Find an activity to do, read a book, paint, crafts, write your thoughts down in a journal ·Exercise, stretch, go for a short walk this you …

Searching for a Good Doctor.

I was thinking today, Oh another new Doctor today.  I was not happy nor Sad, but I thought I’ve got to explain Porphyria again….I could do this in my sleep…. I was thinking.  I had to be honest I had a bit of a negative attitude.  I think we have all felt this way at one time or another, how is the new Dr. going to treat me are they going to understand me, believe me, look at  me weird, think I’m crazy…
I had all my Papers and booklets and Binder ready to go. I was so nervous and this in turn made me not feel so well, but said to myself and prayed that I could have the strength and confidence that I could get through this.I got there and waited they did everything so fast {get you in and out}.Waited for a bit and then it was my time to see the Dr.
The Doctor shook my hand introduced herself to me and said you have a rare disease I was told, what could you possibly have? She asked!
I told her, she looked at me with the crazy look and then excused herself and said she would be right back.Sh…

Honesty is the Best Policy

I was a much more private person before I got sick nearly two years ago. I didn’t feel the need to tell too many people that I could get sick with porphyria-- after all, I assumed I wouldn’t. And for what it’s worth, I’m a very lucky person-- when I got sick, I was able to manage it through a number of activities (which I may detail later), and I got my life and health under control, for now.

But boy, was it ever so hard having to explain to friends, acquaintances, and bosses why I was sick. It was even more difficult because I didn’t look sick. Someone once said to me, “You look fine now.” She was suspicious. I was as bubbly as ever, which was mostly an act-- and not everyone is an expert on health by looking at someone. For a brief second I felt badly that I didn’t “look” sick enough, until I realized whether or not people believed me was irrelevant. The only people who needed to believe me were doctors, and that’s another story, another issue for another day.

Yet I don’t regret a si…

Glamorous (Nonalcoholic) Drinking

Sometimes I want to be like Audrey Hepburn in Breakfast at Tiffany’s, decked out in Givenchy, throwing wild parties (and singing “Moon River” on my fire escape) and holding a glass of champagne while trying to chat up someone with a name like Rusty Trawler.

Of course, the reality is that 1.) smoking cigarettes (like in the picture), even on long elegant cigarette holders is terrible for everyone’s health, 2.) wild parties sometimes end with cops being called, as the guests often find out, and 3.) drinking alcohol is certainly a huge no-no for someone who has porphyria.

Still, I like to hold wine glasses.

So, why not be luxe and still invest in those nice glasses, even if you can’t drink the wine? My favorite non-caffeinated drink is usually pure cranberry juice cut with seltzer water. It sparkles brightly, and it leaves me feeling pure and happy. Glamor, like so many things, is a cultural phenomenon constructed from objects and feelings; why not transfer those objects and feelings to a…

Om: Yoga For Managing Stress

I was taking a walk in Fort Greene park in Brooklyn when I saw a man doing yoga outside. I stealthily snapped a picture of him, not because it was a bizarre sight (sometimes public yoga can be), but because I thought that was so awesome of him. If one of the best ways to lead is by example, then what an extraordinary leader!

His calm and poise reminded me to go home and unfold my own yoga mat and do stretches:

I'm a very lucky girl. I have gone to Golden Bridge Yoga in Los Angeles and seen Gurmukh herself instruct people on kundalini yoga. When I lived in Amherst, Massachusetts I had an excellent hatha yoga instructor at Yoga Center Amherst. I have great DVDs for my home viewing, and I've a good memory for certain moves and postures. I am able to do my own stretching on a budget! My own meditation on a budget!

The great thing is there's a lot of access to free yoga online ( has a free class each week online). If you have Netflix, request a video! Drop in on a cl…

Sugar My Friend. Sugar My Enemy.

It would be easy-- and probably a lot of fun-- to pretend that having acute intermittent porphyria gives me free reign to eat all the carbs and sugars I want. But interestingly enough, after being officially diagnosed with porphyria, I started to make a lot of lifestyle changes and dropped weight at a slow but steady pace. And I didn't alter my carbohydrate intake a single bit.

I owe much of this to my switch from processed sugars to more natural sweeteners like agave or honey, supplementing my choice to use raw turbinado sugar. Every morning I usually add a spoonful or two of sugar to my French Press coffee pot, to cut the bitter and to leave a light sweet taste on my tongue. The turbinado warms to an almost molasses taste-- you can tell because it's brown, not white, that it'll be closer to caramel than just pure white sugar. Life's good for me. I make tea or bake and use agave nectar, which (according to various sources on the internet, which isn't always right)…


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