On Getting Involved

My name is Tonji N. and I am the parent of Christopher N. who has SC Disease. This year I have been an active participant in the program. In February, I attended the 1st Annual Sickle Cell Research and Educational Symposium, “Transition from Pediatric to Adult Care,” in Florida. This symposium was very educational, as well as, informative.

I also attended the parent meetings, which are held on 1st Thursday of every month. They are interesting, although I wished that more people would become involved. It is important that we as parent become informed about sickle cell, so that we can educate others and dispense some of the myths regarding the disease. As a Parent Advocate, I also spoke on sickle cell at Grand Army Plaza at a health seminar.

I was nervous but everything went well. I was asked a lot of questions and I was able to give the correct answers. So again, I just want to say parents should get more involved.

My son on Hydroxurea

“My son, Devin age 4 ½ has sickle cell disease type SS and has been on Hydroxurea since January of this year. His last was in March. Prior to starting this medication, he would get hospitalized like every two to three months.

The decision to start him on Hydroxurea was not an easy one. But after Dr. Viswanathan explained to me the ins and the outs of it, and also I did extensive research, I decided to start him on it.

So far it has been a good decision that I have made because it has kept him well, with less hospital stays. After starting Hydroxurea, Devin’s spirits have changed dramatically. I would truly recommend Hydroxurea to anyone whose child has had many crises. Ultimately, it is up to the parent (do the research) if this medication is right for your child, then “Get with the program”. My experience with Hydroxurea has been a great one, but every child is different. I would truly recommend that you do research, and discuss it with your doctor, before starting any new medication with your child”.