Monday, January 25, 2010

Letters Needed for Nicosan

Hello everyone,

As I'm writing this, I'm having my first pain crises in over a year. I ran out of Nicosan last week, and I got slammed with pain today. So. Not. Fun. I'd almost forgotten how all encompassing a sickle cell crises is. I was relishing my new lease on life only to get slammed back into the depths of agony and pain. Like I said, "So.Not.Fun."

For those of you in the know, the Nicosan factory in Nigeria has stopped production for the last 6 months due to financial issues. Here is a letter from the director of TEAM Sickle Cell and one of the activists helping to get Nicosan back on the market.

As I've told most of you, I'm involved in a project in Nigeria that relates to a very effective treatment for Sickle Cell called Nicosan. I've purposely tried to keep that project separate from TEaM Sickle Cell because I don't want it to seem that the only reason this was established was to help with Nicosan. Right now though, I need your help. We have a medicine that has helped thousands of people reduce the frequency and severity of Sickle Cell crises and right now the facility that produces that medicine is locked up because the banks in Nigeria can't figure out what to do. Regardless of whether or not you or anyone you know is interested in using Nicosan, the fact is that a potential treatment that doesn't have the side effects of the other commonly used medicine isn't available right now because of a bunch of nonsense. Those of you that know me know that I spent six months in Nigeria in 2009 working on getting the problems with Nicosan and the company that made Nicosan resolved, but have been unsuccessful to date. The issue is that once you start using it, if you stop it's like you never took it and the potential of Sickle Cell complications return. On nearly a daily basis I'm answering questions from people around the world as to how to get it, including from many in Nigeria that were on it, but can no longer find it. So, what's the point? I want to make some noise at this point. I want to send emails to the people involved and get them to understand that having the facility doors closed for six months is totally unacceptable. There are many solutions that have been offered and none of them have been accepted and now we have people trying to find alternative medicines. If you're not aware of what Nicosan is, I've set up a Fan page and have posted a series of clinical data documents and other technical documents that you might be interested in. The link to that page is:

If you're willing to send a couple of emails for us, please write to me at and I'll let you know what we are looking to do. Thank you.
As soon as I can coherently think and function and this pain crises is over, I will be drafting my letter of appeal to the banks. It's going to be nothing fancy, just a statement of how much Nicosan has helped me, and how much we need  the factory operational asap. I hope that all the other Nicosan users out there will join us in this fight.

Wednesday, January 13, 2010

Sickle Cell Advocates & Activism

Hello fabulous warriors!

Okay, everyone here has gotten something from the sickle cell online community in one way or another. Now here is your chance to participate and help others with knowledge the same way you have been helped. Remember, we are the only ones that can change the way the world views sickle cell warriors, and we do this by starting in our circle of influence. Here are a few organizations, surveys and communities that need your input to grow and effectively serve us.

Phyllis Bazen, a Nurse Practitioner from the University of Rochester is seeking those with sickle cell to participate in a research study that focuses on factors of stress that sickle cell patients have. I have already participated in this study...and she just needs 103 candidates, so please, no matter where you are in the US, check out the website; email, call or contact Phyllis to join the study. It doesn't take long, just 1 hour, and you have the satisfaction of knowing that you helped to improve the sickle cell body of knowledge (also, for completing it, you get $20). Check it out at

The SCD Soldier Network is currently recruiting people who would like to help promote advocacy programs for adults with Sickle Cell Disease. Fill out the information card on the "Recruiting Station" page and you will be contacted in order to determine where you fit. Our primary function is to provide assistance whenever a person with SCD feels as though they need help with an issue that has arisen as a result of the disease.
  • Employer Conflict Resolution
  • In-Patient Conflict Resolution
  • Consultation
  • Education
  • Outreach
You do not have to have the disorder in order to join....Visit for more info!

WEGO Health is creating a sickle cell network for sickle cell advocates and warriors to connect, so please head over there and join, start your profile and help grow the community. In addition, for those sickle cell activists (YES, THAT DOES MEAN YOU!), that are interested in joining a focus group related to studying the current trends in sickle cell research, please fill out this survey.

To be featured in next weeks' edition of Advocacy & Activism, please send me information about your cause, research project, survey or community. Remember, we all must do our part to bring awareness to the populance and end the sickle cell stigma!

WEGO Health Interview

I just received notice that an interview I did with Marie C. of WEGO Health is so officially posted in the blogosphere. As you know, I'm quite verbose, and once I start talking about sickle cell, I pretty much don't, so the second part of the interview will be posted tomorrow.

The interview goes into the reasons for starting this blog and why I'm so passionate about sickle cell. And a bonus, there is a picture (for those of you that have been clamoring for a face to put to the name!)

Check it out HERE.

Tuesday, January 12, 2010

Staying Warm in Cold Weather with Sickle Cell

Here's a tip to keep warm this winter. Try light fabrics that are layered multiple times. Silk long johns/undershirts are good for keeping body heat close in your body. 100% cashmere is expensive, but lightweight and warm enough to layer with another sweater on top for those extra chilly climes. I usually wear my silk tight pants and under shirt, a regular shirt on top, a cashmere sweater and another bigger, bulky sweater to keep toasty up top.

Cover your head, since 75% of body heat is lost through the head.

Tuck your silk long johns into your socks. Wear leg warmers if you are going to be standing outside for a long time on top or under your jeans.

Wrap a winter scarf around your neck and snuggle into your big winter coat. Try coats that are lined, or filled with some goose down, wind resistant, as well as long enough to cover most of your body.

Does anyone else have tips?

Hopefully this will protect you from the harshest of the elements. Stay warm everyone!

Monday, January 11, 2010

Today's Post

Hello everyone,

This year, I want to start a spotlight series for people with sickle cell all over the world. It will be a weekly thing, and I will just send an email with questions for you to answer. I know from the feed reader that we have readers from Zambia, Nigeria, India, UK, China, Sudan, Saudi Arabia, Brazil, Fiji this trip across the globe will help other sickle cell warriors see how living with SCD works in your neck of the woods. If you would like to share you story, please send me an email!

If you haven't joined the SCW Facebook page yet, come join us! The warriors on here are so awesome, and there are so many other resources for us to share.

To all those that have contacted me about Nicosan, or checked out the usual spot for the Paypal link...I took it off because presently, I'm completely out of stock. I'm trying to get my hands on a few more boxes, but Nicosan is super scarce in Nigeria ever since the company stopped production last year.

Several people are working hard and long hours to get the company up and running again. We just need your prayers and well wishes that whatever the impediment blocking the resurgence of Nicosan, that it will be removed!

I'm super nervous because I've experienced life without major pains for almost 1.5 years. I think that I will be an emotional wreck in a couple of weeks...I can already feel the minor pains twinging. Those wicked sickle cells are probably rejoicing since they get to wreck havoc on my body yet again. I guess this is the story of our lives...

As soon as I get my hands on a box, or 2 or 10...I will of course let the group know.

I hope everyone is doing well, and handling the winter as best as you can. Many sickle cell warriors took ill over the holidays (due to the stress, change in weather, colds, flu etc.) To all those that are ill, I wish you speedy recovery. My thoughts are with you all...and I'm sending you warm hugs.