We were invited to a dinner with a leading expert in the field of rare bleeding disorders last week. It was a very nice evening at Ruth's Chris Steakhouse. We were treated to a wonderful, yummy meal and truly appreciated the opportunity to met with Dr. Mathew's from NM. No surprise, we were the only VWD-III family there. I met two severe hemophiliacs, one seven one 23. It is the most comparable bleeding disorder to VWD-III we are told. I had such a peace talking to these brave boys. Both agreed that neither feel different than their friends and feel they are totally normal. Both play sports (no football) and do everything that they want to. One is on Prophylaxis- his mom infuses him every Sunday and Wednesday. No port- just the butterfly IV. They first apply numbing creme and he does not even feel the poke any more. He is the seven year old...he promised me it did not hurt :)
I saw my first port in a 2 year old with mild hemophilia. Neither of the severe cases had it but the mild did??? Goes to show the type does not exactly predict problems. That baby resulted with a brain bleed after birth (again thank you Jesus for my c-section that unknowingly protected my baby). For the first time I was with people that got it...my fears, my concerns, etc... They were all there once. The parents all graciously shared their experiences with us. They assured us that it gets easier and less scarier and just becomes "normal."
Michael and I were both granted some time with the doctor. He felt that her case actually sounded more like a muscular Type I. Since the only problems we have seen are after shots (muscular). He offered a better way to administer her shots that we will try this month (ugh...shot time already). He gave us all the hope in the world with her case. It was a very nice evening....meeting new friends, having a nice dinner and feeling very encouraged.
No comments:
Post a Comment