Meet Sarah, a 16 year old living with Morquio A. She and her mother Ruth share their journey, which began when Sarah was diagnosed at 2 and a half years old and continues today, as she receives her weekly treatment with VIMIZIM® (elosulfase alfa).
Learn about Sarah’s experience with her weekly VIMIZIM infusions.
“I had concerns before I started VIMIZIM infusions, mostly because I’m a huge needle-phobe. The second I heard it was an infusion, I got really scared. I wanted to know if there was anything they could do to lessen the pain of the needle. I ended up using a port and I really like it. It helps with the needle fear. The nurses put numbing cream on it and they can also use it to draw blood, which makes things so much easier for me. I’m happy I got the port. It’s just worth it.
And let me add that my nurses are absolutely amazing, and I’ve been with them for a year and a half, so we totally understand each other. There are some nurses I know better than others, but they’re all very accommodating.
I try to keep busy on my infusion days. Since I don’t go to school on those days, I bring homework to do at the infusion clinic. When I first started, I didn’t know how to use my time. I showed up with tons of homework. I didn’t realize how tired I’d get during the infusion (because they give me an antihistamine to help prevent a reaction) so I didn’t get to all of that homework.
My advice is to not bring tons of things that you expect to do, because you can get distracted by the activity of the room, and you may get sleepy. Usually I’ll do a few hours of work and then I’ll watch movies, or just read for a while. If it’s summer, I’ll jump on Facebook and catch up with my friends. I’ve got about 4 to 5 hours to fill.
I wish I’d known to talk to my teachers before I started getting infusions. They all understand now, but it took some explaining to make sure they got how important these infusions are to me and my health. Having those conversations really helped. And making sure to get the work I’m going to miss because of my infusion day helps, too!
I’ve missed a few infusion sessions because of vacations, or midterms and finals, but I try to reschedule if I can. My energy is up. And I’m able to do more of the things I want to do that I couldn’t before because I’d get tired. The treatments can take a long time, and there can be side effects, but it’s so worth it.”
Facebook” is a registered trademark of Facebook, Inc.. All rights reserved.