The Ladies of #BoldLipsForSickleCell attends the Novartis Iron Overload Blogger Summit.

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In January of 2016, the founders of #BoldLipsForSickleCell attended the Iron Overload Summit. We learned so many great things on our trip to Ft. Lauderdale for the Iron Overload Blogger Summit #Sponsored by Novartis Pharmaceuticals. We were so glad that the community gave us questions to ask them directly. We learned that they truly are concerned about the patients who deal with Iron Overload. An important fact to know is as few as 20 units of blood for an adult and 10 units for a child can lead to iron overload. So once you get close to that point make sure your doctor checks and keep up with your ferritin levels. We expressed all the concerns patient has about Exjade and thankfully Novartis was well aware of all those concerns. Those are the reason why Jadenu was formulated. Exjade causes so many stomach issues for those who take it and Jadenu eases those issues. As of October 2015 Jadenu was approved to be taken with a light meal. This meal should be less than 7% fat content and 250 calories at most. Also, the pill can be crushed or ground and mixed into applesauce or a low fat yogurt. There are patient assistance programs to help assist with the cost of the medication. Patient resources can be found at www.novartisoncology.com as well as www.jadenu.com. Assistance varies by insurance and state. These medications are not available at all pharmacies. You must use a specialty pharmacy. Again your insurance company can help you locate these pharmacies. Josephine Bila was one of the patient bloggers on the trip. She has a blog www.josephinebila.com where you can learn so much about dealing and coping with iron overload. We didn’t speak about Desferal as much as the other medications. One question asked about it was constipation it causes and the best way to combat that is a fiber rich diet as well as an over the counter laxative or stool softener. We hope this information is beneficial to those who deal with Iron Overload. We’re so humbled and thankful to be trusted by the Sickle Cell community to represent our voice at events such as this one.

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