Oh my goodness, i just was sent a link to the most interactive sickle cell forum on the web! It was started by an obviously tech savvy and funny fam. You can upload blogs, pix, links, videos and just pretty much everything else like you could on Myspace/Facebook and other social networking sites—but it’s all […]
The Adult Sickle Cell Quality of Life Measurement Information System(ASCQ-Me) Project is creating a tool to help doctors and researchersacross the U.S. better understand what it’s like for adults livingwith sickle cell disease. By understanding how sickle cell affects a person’s daily life –like how it affects sleeping, eating, being able to move around,emotions and
New Adult SCD Study Read More »
For those of you unable to get Nicosan or unwilling to join in the wonders of Nicosan, one of my readers, Charles, was kind enough to put together a list of other remedies that have been shown to alleviate sickle cell crises and pain. (Not cure—but alleviate!) I haven’t tried all of these out myself,
There is a study underway on bone marrow transplants in children that you or your child/niece/nephew/grandchild…etc. might be eligible for.The NMDP and other organizations are working together on a clinical trial for children (ages 3-16) with SCD. A study like this has never been done before and it aims to determine the effectiveness of unrelated
Jay sent me a question that I think some other people might have. So we are going to do a comparative analysis on the two medications My doctor recently put me on Hydroxyurea. I was hesitant taking it because of the long term side effect of leukemia, but in the end I took it. I’ve
Hydroxyurea vs Nicosan Read More »
This article is from the medical journal ED Nursing printed July 1st, 2007. I’m putting it on here so that more medical professionals can see that it’s not wrong to treat sickle cell patients properly. The most pertinent parts for me will be in bold. Hola at Dr. Tanabe for hitting the nail on the
Stop Delays in Treatment of Sickle Cell Patients Read More »
I got this from Our Voice, a new sickle cell blog that just launched in the blogosphere. Go over there and say hi! According to the Washington Post, May 29,2008, Johns Hopkins Instituteresearchers developed a human stem cell line containing the mutation associatedwith sickle cell anemia. They say, “One challenge to studying blood diseases like
Sickle Cell Clinical Trials Read More »
My, my, my that was a hot topic. I didn’t even know that many people read the blog. I would like to thank Anon RN and Anon Parent for stepping up to the plate and bringing this up. Personally I hate it when people assume that just because we are on narcs we must be
Re: Sickle Cell Drug Addicts Read More »
Today is my 2nd day of being on Nicosan. One of my readers believes so much in this medication that he ordered and shipped it to me! Thank you for that…now let’s get this guinea pig in motion. So far, I haven’t had any side effects, no sickle cell pain but I haven’t really noticed
This is a comment from one of my readers that is 46 that has the sickle cell trait but not the disease. Some times I have unexplained pain in one of my feet, but it’s usually only when it’s cold, and after reading some of your blogs, I see that cold weather seems to trigger
People with the Trait Have Pain Too! Read More »
