By Tonji N
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.
By Catrese H.
“My son, Devin age 11½ has sickle cell disease type SS and has been on Hydroxyurea since January 2004. Prior to starting this medication, he would be hospitalized like every two to three months. Since he started he has only been hospitalized three times in seven years.
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”.
To Dr. Viswanathan and the entire Division of Pediatric Hematology/Oncology, I would like to sincerely thank you for extending the invitation and sponsoring my trip to Washington, DC to attend and participate in the 38th SCDAA Annual Sickle Cell Conference. As the mother of a child with sickle cell disease, I was looking forward to the conference.
I wondered what I would learn from the doctors and other sickle cell experts and also the other parents with children who have the disease. I was able to attend several of the group discussions, which included Long Therapies Hydroxyurea in Children and Adults, Pain Chronic and Acute, and Transfusion Therapy and Iron Overload. Attending this conference was enlightening as it was overwhelming. It made me very scared for my child and somewhat discouraged. It was surprising how little research and money has gone into sickle cell disease. It is apparent to me that sickle cell is considered an African American and Afro-Caribbean disease.
Overall, I thought the events throughout the conference were well planned, and all the presenters were well prepared. The Chairman's Welcoming Reception" and the "Reception & Dorothye Boswell Gala" which concluded on their respective days, were exceptionally wonderful and the food was great.
The Keynote speaker was Roslyn M. Brock, NAACP Chairwoman who gave an inspiring speech about the disease and the NAACP's pledge to work closely with the Sickle Cell Commission. However, when it is all said and done, I am still a parent of a child with the Sickle Cell disease, and even though we have celebrated 100 years, and have come this far in research, there is still a lot to be done for both children and adults with Sickle Cell. "We have a new voice", we need to use it!
Our multi-disciplinary professional staff offers a range of psychosocial, educational, child life and nutritional services to our patients and families.
We conduct monthly parent and youth support group meetings. A support group is a safe non-judgmental environment, where parents and patients can share their experiences with one another. Parent and youth support meetings allow participants to support each other and we as facilitators make it happen. Overall, it is a team effort!
Held on the first Friday of each month (excluding the month of August).
Youth group- 4:30pm-6:00pm
Parent group- 6:00pm-8:00pm
9/4/2010 – Preparing “Back to school Jamboree”
5/7/2010 – Movie afternoon
4/9/2010 – Transition! What is it?
3/5/2010 – What are sickle cell signs and symptoms?
2/5/2010 – How did I get sickle cell?
6/4/2010 – Preparation for back to school Jamboree
5/7/2010 – Mothers Day trip- Olive Garden
4/9/2010 – Transition! Why prepare?
3/5/2010 – What is the role of the parent with sickle cell- Advocacy.
2/5/2010 – Trip to Albany
Presentation by SCTPN
Division of Pediatric Hematology/Oncology
One Brookdale Plaza
Suite 346 CHC
Brooklyn, NY 11212-3198
Phone: (718) 240-5904
Fax: (718) 240-6730
Emergency Beeper Number