I recently read an interesting article about a new drug for hemophilia B called: Idelvion [Coagulation Factor IX (Recombinant), Albumin Fusion Protein] which I highly recommend that you read. It offers five or six quick facts at a glance that will help you get up to speed on this new self-administered infused drug that people (adults and children) take prophylactically.
Meanwhile, I thought it might be helpful to offer up some myths about hemophilia in order to better understand it. Let’s face it, we all love a good debunking now and then!
Get Ready. Get Set. Let’s Debunk Hemophilia Myths!
- No, it’s not contagious. It’s genetic, inherited from either the mother or father.
- If a person with the condition gets a cut or a bruise, they will NOT automatically bleed to death. They bleed like other people without the condition, they just bleed longer. It’s possible to control the condition with factor treatment.
- People who have hemophilia can’t just “snap out of it.” (Remember Cher’s voice in Moonstruck?!) You cannot just “will” it away. It must be treated and managed.
- Eating healthy foods and/or taking certain vitamins and supplements will not cure or manage the condition. It won’t have any effect on bleeds. People with hemophilia have to have the appropriate level of factor to control the bleeding.
- People with the condition must live sheltered lives is FALSE! Because of advances in technology and medicine, there are treatment options and it’s possible to live a relatively normal, and rewarding life! Granted, there are certain physical activities and sports that should be avoided, but people with hemophilia can otherwise live normally. They can become doctors, painters, football coaches, secretaries, CEOs, paper carriers, and chefs. The sky is the limit!
So now, I’d like to hear from you. Do you have any myths that you’ve encountered from less than enlightened folks about hemophilia? I’d ESPECIALLY like to hear from you if you’re in the dating scene and had to set someone straight.
