I was born in South Africa on October 27, 1941 in a town called Benoni close to Johannesburg. One fine day I was at work and had walked to the factory section in order to retrieve some documents (I was the Production planner and coordinator of a cardboard box producing factory, one of the biggest in South Africa, Barlow-Weyerhaeuser). I was 32 years old at the time. My name was called out on the loudspeaker to return to my office for an urgent meeting. I made a quick U-turn and suddenly felt an extremely painful wrench in my chest. I sat down; I couldn’t move until eventually the pain eased off. I never went to that meeting.
I went straight to the Drs. rooms. He was our family Dr.and he suspected I had malaria as my spleen was swollen but he also sent me to the labs to have an extraction from the centre of my sternum to check for Gaucher’s disease. Wow was that painful!..This was 42 years ago.
Anyway to cut a long story short, I had Gaucher’s disease and so did my sister but not my brother..he was lucky!! There was no cure …to this day there is no cure but at least we have enzyme infusions to stop further deterioration. We (our family) decided to leave South Africa and come and live in Israel..this was in 1977. I saw the head of the Gaucher’s dept., Prof. Ari Zimran, but in those days only very severe cases were given the drug and I was 50/50.
So, living on pain meds with my physical condition deteriorating slowly, I continued working. Then in 2002 Prof. Zimran said they were looking for volunteers to test a new drug TKT, which eventually became known as VPRIV. I readily agreed !! There were 12 of us and the drug worked as good as Cerezyme, and after 7 years it was approved of by the FDA much sooner than expected because Cerezyme at the time was having property problems caused by contamination with their drug. So I’ve now been on VPRIV for 14 years by courtesy of Ministry of Health and expect to stay on it until my death. I have a nurse come to my home every two weeks and administer the VPRIV infusions 6 bottles at a time.
My wife, who is not a carrier of a recessive gene, and I have 3 daughters who are all married. Our daughters are carriers but none of their husbands are and we have 11 healthy grandchildren!
-Basil Swimmer; Rishon Lezion, Israel