Community StoriesCindy M. in Marina, CA
It was May 2006 when we were told that my son, Eric, had severe hemophilia A. He was eight months old at the time, and I remember listening to the doctor tell me about hemophilia and how it was a long road with lots of decision making and choices. But I don't remember much of what they said, because I was afraid of what would happen, of what to do, and how we were going to live our lives. We went home, and I tried to find out the most I could online. Much of the information was scary, and the scariest part was trying to put it in simple words for my husband, who was 3,000 miles away in El Salvador. I did not want to scare him, since he had our oldest son and I was worried about not being able to test my oldest son to see if he also had hemophilia.
There were all kinds of feelings that came with Eric's diagnosis: fear, sadness, loneliness, blame, uncertainty, confusion. But the big one was depression. I felt like there was nothing that I could do for my son, and seeing him with bruises on his knees and elbows led me to pad the floors and dress my little boy like a football player. I had to put on a strong face and started to come to terms and see what was the best that I could do for Eric.
Life had to go on, so I started searching for a day care center. It was hard because none of the day care centers were able to take care of Eric because they were afraid that they did not know how to deal with hemophilia. One place even told me that he would be an insurance liability. Finally, after a long period of looking, we found one that was willing to take care of him, and I was able to go back to work.
As Eric grew, the ER visits started to come more often as he had more bleeds. I remember the one that changed the way I would have Eric treated. He had a bleed on his bottom, and the nurses and doctors were having trouble finding a vein. I was getting frustrated and unable to take any more suffering, so I left my son with the nurse, picked up the phone, and called our HTC. I told them I wanted them to put a port in Eric as soon as possible.
I really did not know how much our lives could change with using a port. The port gave me the feeling of safety-and-efficacy that in an emergency he will be able to get medicine into his body as soon as possible. Eric was 14 months old when he received the port, and that is also when he went on ADVATE. Just knowing that ADVATE is made without human blood-based additives gave me assurance.2-4,a With the help of the nurse, I learned to treat him at home by practicing on a doll. At first, every time I poked him my heart would drop, but it got easier over time. We've been able to travel to El Salvador to see his dad and siblings because I know I can treat him whenever he needs it.
Eric is a strong boy who is really involved in his treatment. He knows his supplies, and he knows what to expect when he's treated. Recently, Eric had his first port replaced, but through all of that we have made it through, and every time we get stronger and we learn to live day by day. What we have learned as a family is that we have control of Eric's hemophilia; it does not have control of us. Eric does everything any other 3-year-old does. My dream for Eric is to learn to be independent and live as normally as possible. I would like to thank my HTC team and everyone that has been there with us through thick and thin. Every day we go without a bleed is a good day, and we always have ADVATE on hand.
We are a hemophilia family, but we have control.
Cindy M. Marina, CA
a There have been no confirmed reports of viral transmissions with recombinant factor VIII therapies.
ADVATE [Antihemophilic Factor (Recombinant), Plasma/Albumin-Free Method] is a medicine used to replace clotting factor VIII that is missing in people with hemophilia A (also called “classic” hemophilia). ADVATE is used to prevent and control bleeding in people with hemophilia A. Your healthcare provider may give you ADVATE when you have surgery.
ADVATE is not used to treat von Willebrand Disease.
Detailed Important Risk Information for ADVATE
You should not use ADVATE if you are allergic to mice or hamsters or any ingredients in ADVATE.
You should tell your healthcare provider if you have or have had any medical problems, take any medicines, including prescription and non-prescription medicines and dietary supplements, have any allergies, including allergies to mice or hamsters, are nursing, are pregnant, or have been told that you have inhibitors to factor VIII.
You can have an allergic reaction to ADVATE. Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea, or fainting.
Your body may form inhibitors to factor VIII. An inhibitor is part of the body’s normal defense system. If you form inhibitors, it may stop ADVATE from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to factor VIII.
Side effects that have been reported with ADVATE include: cough, sore throat, unusual taste, abdominal pain, diarrhea, nausea/vomiting, headache, fever, dizziness, hot flashes, chills, sweating, joint swelling/aching, itching, hematoma, swelling of legs, runny nose/congestion, and rash.
Call your healthcare provider right away about any side effects that bother you or if your bleeding does not stop after taking ADVATE.
Please see ADVATE full Prescribing Information.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
