Comments for Hemophilia Blog

Comment on Legislative Day in Texas by David

David — Sat, 09 Feb 2013 22:32:59 +0000

Hey Andy, it was really cool visiting with the Senators and House members about hemophilia. Glad to have had the opportunity to bring up important topics for our community to those who can advocate for us.

Comment on Hep C Treatment Blog by Cheryl

Cheryl — Sat, 02 Feb 2013 07:03:05 +0000

Well, I’m certainly disappointed to read your most recent post, but am so impressed with your incredible attitude. So many people will be inspired by your journey, and will be willing to embark on their own as a result of you sharing your experiences. My husband successfully completed 24 weeks of triple, and is now SVR. I’m sorry it didn’t work for you this time, but you do know what to expect for next time. Wishing you smooth sailing, and all the best

Comment on Hep C Treatment Blog by Christopher Gulledge

Christopher Gulledge — Wed, 13 Jun 2012 22:14:53 +0000

Im from chicago, im 14 and I have severe hemophilia type An and an a
inhibitor. I have a a/v fistula ( if you dont know what that is id suggest you look it up) ,we built a large vein for me to inject my factor. I take 100ml of anti-inhibitor coagulant complex feiba each day. And I have had a lot of bleeding in my ankles. which has caused joint damage such as degenerative joint disease, arthritis, synovitis, synovitis in both ankles.

Comment on The Awesome Benefits of Taekwondo by andy matthews

andy matthews — Fri, 08 Jun 2012 16:12:31 +0000

Great article if I have to say myself and this sport really has changed keeton for the better and would just be awesome for some kids with hemophilia and might really give them a new found sense of self confidence!

Comment on Hep C Treatment Blog by Mark Antell

Mark Antell — Sat, 28 Apr 2012 13:36:10 +0000

Andy,

People with bleeding disorders have lived through great challenges, and maybe that’s helped us develop an increased ability to wade through hard times.

Thanks for telling us about your experiences with HCV therapy. I congratulate you on sticking to therapy despite some rough side effects.

But ….

I think that the approved current therapies are just not good enough for a blanket recommendation. Here’s a very recent article on high levels of serious side effects with Teleprevir or Boceprevir in people with advanced liver disease:

http://www.hivandhepatitis.com/hepatitis-c/hepatitis-c-topics/hcv-treatment/3560-easl-telaprevir-and-boceprevir-are-effective-but-can-cause-serious-side-effects-in-patients-with-cirrhosis

Best,
Mark Antell (Hemophilia A and HCV)

Comment on Hep C Treatment Blog by Melinda

Melinda — Mon, 05 Mar 2012 23:38:01 +0000

Andy,
I check your website occasionally but you can tell it’s been a busy school year because I’m just now seeing your blog on doing treatment. I sent it on to Travis so he can see how you’re doing. Your rash looks just like my daddy’s shingles and I know how miserable he was. It was great to read you cleared the virus but I’m going to still say some prayers for you for awhile.

I guess I haven’t seen you since 2010 but the picture of Keeton took me by surprise. He’s not so little any more!

Melinda

Comment on Hep C Treatment Blog by mindy

mindy — Tue, 07 Feb 2012 02:50:15 +0000

hang in there Andy, looks sore, but it will be worth it when all done!

Comment on Hep C Treatment Blog by toni thompson

toni thompson — Sun, 15 Jan 2012 19:56:06 +0000

Oh Andy, my wonderful brother , I hate seeing you suffer like this. You are one strong, brave and courageous man. I love you and am praying that your rash will get better. You are strong in your faith and you are my hero.
I love you, Toni

Comment on Hep C Treatment Blog by Cheryl

Cheryl — Sat, 14 Jan 2012 04:18:53 +0000

Hi Andy-So glad to get an update from you. That rash looks nasty – have you tried acupuncture? I’ve read on many sites that it’s really helpful for the rash side effect. Just my two cents. Congrats on being UND – that’s huge! Wishing you the very best.

Comment on Our Co-Founder David gets another ankle fusion by Lynne currie

Lynne currie — Sun, 08 Jan 2012 01:26:01 +0000

I am a 46 year old female with Type 3 Von Willibrands. I have end stage arthritis I n my left ankle from bleeds. Fusion was advised 30 years ago and I have put it off until now. I have used a blue rocker brace for the last 10 years.

I admire that you have not allowed hemophilia to slow you down. I was the first girl at hemophilia camp in Michigan in the seventies.

Since then ii have married and sailed our 43′ sailboat from London, England to Florida. I have also crewed on J-24′s with an all female spinnaker crew.

What I would like is advise on what I can do to get in the best physical shape for fusion. And what I can expect for recovery time