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Through this journal I will be documenting my journey to meet the faces behind the Gaucher Initiative, a humanitarian program that provides Gaucher patients in developing countries with the enzyme replacement therapy, Cerezyme, free of charge. I have the rare opportunity to meet with patients and their families and physicians to see how the Gaucher Initiative has and continues to affect their lives.

More from Cairo

Friday, April 25, 2008

A second day of escape from the heat!  Dr. Reda Abdellah of Project HOPE’s Egypt staff organized a comprehensive training workshop day.  This is a small part of the group of about 60 physicians from around the country who came and participated.  We timed the photo op for lunch break, so most of the group not only stayed inside the cool building, but got a head start on the feast!

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F2f042508_2 Here I am with Dr. Abeer from Mansoura and Dr. Iman Mazouk from Alexandria, during a break in the training workshop at National Training Institute.

Cairo

Thursday, April 24, 2008

F2f042408_1_2 After three days of a heat-wave with temperatures in the 90’s++, it was a pleasure to spend today inside an air-conditioned conference room.  Physicians from the six treatment centers gathered at the National Training Institute for a medical oversight committee meeting.  The Egyptian (Gaucher) Expert Committee convenes twice a year to review patient cases and to share their cross-functional expertise.

The very animated session was the 10th meeting for this committee whose members donate their time on behalf of the patients.  Their recommendations will go to the core Medical Expert Committee which meets in May and will be the basis for final decisions on the Egyptian patients’ ongoing care.

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Off to Mansoura

Tuesday, April 22, 2008

We got off to an earlier start this morning even though Mansoura, our destination, was about half the distance as Alexandria. We took what is known as the "agriculture road," and as the name implies it was green with crops and vegetation. I learned that yesterday's route is known as the "desert road," and aptly so!

Mansoura is a pleasant city, built along the Nile as most of the cities are. We arrived at Mansoura University Children’s Hospital, or MUCH. (I like that, very MUCH!). We were welcomed by Dr. Ahmed Abdallah, Prof. of Pediatrics and Director of the pediatric gastrointestinal unit. And yes, he even has MUCH on his card.

The patients and their families were waiting. Many had come quite a distance just to meet us, so Dr. Abeer, their treating physician, took us upstairs to two large, windowed rooms where the patients come every two weeks for their Cerezyme infusions.

Since this was my first trip to Mansoura, it was also the first time for me to meet these patients. The smallest little guy - about a year old - was sound asleep while getting his 2-hour IV infusion.

Dr. Abeer said it was touching how tightly everyone has bonded. She amusingly told us that all she has to do is explain something to one patient and before she can begin contacting the others the word has spread like wildfire. Amazing since they are all children, the oldest being 11.

She is impressed by the extent to which the parents have become thoroughly informed about the disease and the infusion process. This helps make things run more smoothly and quickly at the hospital.

Everyone comes to the hospital on the same day and so have become like family. Recently a new patient arrived for the first infusion and the group immediately welcomed them and explained about what to expect. And most importantly to give them their moral support.

So how did I like this day in Mansoura? I liked it very, very MUCH!

Tomye Tierney Written by Tomye Tierney Vice President and General
Manager of Emerging Markets
at Genzyme Corporation.