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 firstname.lastname@example.org 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.