Hemophilia is a rare disorder where a person’s blood lacks a factor which enables it to clot, leading to excessive bleeding that can become life-threatening. This bleeding can occur internally or externally. According to the World Federation of Hemophilia and the National Heart, Lung…
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Planning a pregnancy with hemophilia can bring up a lot of questions. While many pregnant women with the condition don’t experience major complications, careful planning and comprehensive care are needed to ensure the best outcomes for you and your baby. Learning about hemophilia and pregnancy, including…
One of the most pervasive and amusing misconceptions about hemophilia is that a person with the condition could bleed to death from a tiny paper cut. People often think that those with hemophilia must avoid everything that is sharp, which isn’t entirely accurate. Hemophilia doesn’t cause people to…
Spark Therapeutics will present novel results regarding the ongoing Phase 1/2 clinical trial (NCT02484092) investigating SPK-9001 in hemophilia B patients at the International Society on Thrombosis and Haemostasis (ISTH) 2017 Congress, to be held July 8-13 in Berlin. Two presentations focus on data from the trial: “SPK-9001:…
I’ve been dating for nearly 40 years, and consider myself somewhat of an expert. Valentine’s Day feels like the perfect opportunity to impart my experience and wisdom. One thing is certain: Dating with hemophilia and von Willebrand disease is like a box of chocolates — you never know…
The other day, I asked my husband, Jared, if he’d ever consider leading a harm reduction seminar for the teens in his hemophilia organization. His immediate response was, “Of course — but would the parents be ready for that conversation?” That question hit me. As…
The paladin By-Tor from the Order of Light fights to protect others and always chooses life over death, even when it places him in certain danger. In the world of Dungeons and Dragons, he uses his sword and…
Patient advocacy groups in five states will focus on the challenges affecting patients with blood disorders like hemophilia with the support in part of grants from the Local Empowerment for Advocacy Development (LEAD) program, sponsored by CSL Behring. The five groups are the Bleeding Disorders Foundation of Washington (BDFW), the …
The internet is overflowing with life hacks that can make tasks easier. From using a plastic knife to cleanly cut brownies to using pillowcases to clean ceiling fan blades, there are hundreds of tricks to help people solve problems. For example, I recently grabbed a roll of Press’n Seal…
When people hear the word “hemophilia,” they often picture severe bleeding, bruising, or swollen joints. Those are the visible symptoms, the ones doctors, nurses, and even family members understand. But living with a bleeding disorder is so much more than what meets the eye. There are symptoms we…