Welcome to sweetaffliction.com – A Hemophilia Blog

So it begins…… Sweet Affliction is our blog about Hemophilia. Shall we say – the Hemophilia lifestyle. Much of it will be autobiographical in nature focusing on our experiences living with the disease.  Since we are both adults born prior to 1990, many of the stories and posts here will focus on HIV and Hepatitis C – two diseases that many OLDER Hemophiliacs like ourselves were infected with by contaminated blood products before there were effective processes in place to protect the blood supply. Today Hemophilia has become an extremely manageable disease. Patients and their families are blessed with a variety of EXTREMELY SAFE and very effective medicines and treatments. Many of THESE young family’s stories will unfold on this site as well. Some will be heartbreaking, but we know that MOST will be uplifting, engaging and leave lasting impressions in your memory as you read, listen and watch the stories present themselves. Hemophilia continues today to be a disease that flies under the radar with so many people and even healthcare workers having very little if any understanding or knowledge about the disease. Things like the fact that it is extremely common for a patient with Hemophilia to spend 1 million dollars annually in medical costs just for clotting medicine alone, with most patients spending at least $100,000. That fact alone makes this affliction a compelling one and illustrates the disaster of the current American healthcare and insurance landscape. We will focus on many of these types of topics as we progress down our life journeys and glimpse into the lives of many others. We hope you will enjoy this site and visit it often!


5 Responses to “Welcome to sweetaffliction.com – A Hemophilia Blog”

  1. Thanks for blogging. It’s great to see more of the Hemophilia Cmmunity letting their voice be heard. Both of you are great role models for our young kids looking to find their way in the world.

    Thank you again for showing our sons there is a path for them.

  2. Thanks for starting this blog, this is great.

    I just found out that my son has to leave our regular pharmacy and use either Caremark or Walgreens (thanks BCBSNC!) – I’m heartbroken. We loved our pharmacist. Is anyone else running into this problem?

  3. I’m a 23 male living with hemophilia, just wanted to let some kid’s know that you might feel that hemophilia is a bad thing to grow up with, I know i did. But when I grew up, out of high school, it didn’t matter anymore to me. All I know hemophilia, is what made me who I am today, which I like. The care for others is most thing I like about myself, which i don’t think i would have if I didn’t have hemophilia. Well, I just wanted to throw that out there. Andy is a inspiration to me, wonderful guy, if you ever get to talk to him or meet with him, do it, great guy to talk to. Well I have to run to class. Talk to yall soon.

  4. Got a little break between classes, I also wanted to say about hemophilia is that I couldn’t imagine having this condition back when there was no medical care. I couldn’t imagine bleeding internally or externally on my body and just praying for some miracle. We are blessed that we have the advanced medical technology that we have today. Kids growing up today, just keep in mind stay physically fit that means work out your joints, light weights, DO NOT let a bleed go untreated for to long, infuse as quick as possible, you will thank yourself later in life, because every time there’s blood that get’s into your joint’s (bleed) a long period of time there’s a huge chance that it will never heal completely (trust me I know) and more likely to have recurring bleed’s over and over until you have to have surgery or have to live with the pain for the rest of your life. What I found that help’s a lot, that is if u can, that I started doing recently and which I wish I did all along is prophylaxis, that means you infuse yourself every day or every 2 days even when you don’t have a bleed. That keep’s your factor level up, so that being less likely to have bleed. See yall later, Josh

  5. Hi,

    I just want to know that ,how can we increase the bone density ? Doctor told me that I have less bone density. Please give your suggestions

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