Tuesday, September 29, 2009

Nicosan Testimonial

One of my readers who has been on Nicosan for about a year now, has written this wonderful review that I would like to share with everyone. If anyone else has a Nicosan story that they would love to share; good, bad or indifferent; please send it my way. Also, if you would like to ask any questions about this, please leave a comment below or send me an email.

To whom it may concern,

I am an African-American male with Sickle beta Thalassemia and I have been meaning to write something on my experience with Nicosan to give other people trying to manage sickle cell more perspective. Currently , I am school and I hope to graduate soon as an RN. I only mention this to let everyone that I do have a medical background. However, my medical background isn’t supposed to convince you to take Nicosan. My main point is only to illustrate to you that I did EXTENSIVE research into the literature that’s available and am able to understand what the studies refer to.

So I have been taking Nicosan for about a year. I take my pills every day, and don’t skip any days. I usually take them with food because I also take a multivitamin which makes me feel nauseous if taken on an empty stomach. When I first heard of Nicosan I was extremely skeptical. I am very active with staying up to date on current research into Sickle Cell treatments. Hearing of any cure/treatment becomes one of those things that makes you afraid to hope. However, I looked at the early studies for Nicosan and they are very strong. It is very rare to find a double blind, randomized, prospective study. However, I had an issue with the fact that I found this over the internet. My thought was anyone can make claims over the internet and I wanted to speak with someone that actually takes it. Well, I did and I was convinced to purchase them. In a couple of weeks my Nicosan shipment arrives. Well, I still don’t take them because I’m still worried that it won’t work and they could be harmful. Well, I was finally told “what are you waiting for”. To be honest, the fear of disappointment was probably what was holding me back. So I started taking them and below I have written a little bit about my experience. I hope this is helpful.

Onset of effectiveness.
So my experience has been that you really do need to wait a little time to see a difference. The thing that makes what we are doing tough is that we aren’t looking for something to happen, we are hoping for something not to happen and the only the way to prove that is time. Initially, when I begun taking Nicosan I actually had these very small pains in places I normally didn’t. It was almost as if I was having a micro-crises, if that even makes sense. For example, I really can’t remember ever having pain in my hands, but when I first started Nicosan I did. However, these could be easily managed with Tylenol or Advil, but I didn’t take anything because I dislike frequently taking pain medication.

Threshold of Crises
So this factor is one of the biggest differences that I have seen with Nicosan. I am very careful with monitoring my activity level to prevent a crisis. As I have found that an ounce of prevention in worth a pound of cure with Sickle Cell. I can honestly say that I am able to do and be more athletic than I was before taking Nicosan. Although I didn’t do a “double-blind randomized controlled study” or anything, I did keep track of my workout. Before Nicosan I wasn’t able to perform cardiovascular workouts very well. I could maintain a low intensity cardio workout just fine, however, I kept my heart rate low to decrease the amount of oxygen I would need. After Nicosan, I was putting my heart rate higher without any problems. Any pain that I experienced I would just take motrin 400mg. This for me was a very big deal. Now please don’t think that I became a marathon runner by taking Nicosan, I still don’t do certain things like running because it causes me problems the easiest. Personally, I like the elliptical. However, the point I’m making is I am able to be healthier than I was before. I really don’t’ know what my true limit is because I never push it. That’s just a part of managing sickle cell. However, the psychological fear of pushing myself was very strong. This feature is characteristic of many people with chronic disease. Studies have shown that chronic disease affects every part of your life. As a consequence of reducing the “threshold of crises” it reduces my fear of being active.

Quality of Crises
So this area is very subjective. I want to make sure to mention that someone’s experience in this area could really vary. Over the year that I was taking Nicosan I never really had any episodes that I would consider big crisis. However, when I first started and when I got the flu I did have a crisis. Ordinarily, when I have a “real” crisis it lasts about three days, with the 1st day being the worst and it getting progressively less painful by the end. Generally, on the 4th day I don’t have to take any medication. However, after being on Nicosan they were different. The crisis for me actually lasted a little bit longer, however it was significantly less intense and painful. The crisis could basically be managed with less medication and it wasn’t as debilitating. This seemed kind of strange to me and really I can’t say that Nicosan was directly the cause because so many different factors affect the course of a crisis. However, it’s not something that I had experienced before taking Nicosan.

Frequency of Crisis
The frequency of crisis goes hand in hand with the threshold. If it is harder to have a crisis from taking Nicosan then hopefully I will have less of them. This really has been the case. I was free from any significant pain that required medication (including motrin or Tylenol) for almost a year until I got the flu. Plus, I was very active. I was working a lot and very stressed out from school. However, I also made sure to drink 3 liters of water per day.

Story of an ER Visit
My brother has sickle cell as well and I told him to take Nicosan. Well he had only been on it for a week and was on a long flight when he started having abdominal pains. Needless to say, they made him go to the ER by ambulance during a layover. So he called me. Every time a Physician spoke with him he called me three-way. I basically, informed the Attending physician, the resident, and everyone else who needed to know what Nicosan was. I informed them how it works in the body and directed him to look it up on the Cochrane review database (this is a peer reviewed database to evaluate research). Now remember, this is a medication that has orphan drug status in the US, but still isn’t FDA approved yet. Do you know what his discharge instructions said when they let him go? “Continue taking Nicosan as you were” They couldn’t find anything wrong with it. Now, they didn’t prove it worked or anything. But, they didn’t tell him not to take it. I personally, think that fact says a lot.

I would like to sincerely thank Vixen for all of her efforts to help support others with sickle cell. Her blog and her willingness to put herself out there for something she believes in is incredible. I can’t remember how I happened to come across her blog, but I did and I would never have found Nicosan if it wasn’t for her. I’m not sure if everyone that visits her blog are really aware at how much of a “secret” Nicosan is. I have spoke with so many people in the medical field who have no idea that it exists and have never heard of it. Now, these aren’t just ordinary people, they are professors and researchers who still don’t know. I have even spoken with medical professionals who are from Nigeria who have never heard of it. So what Vixen is doing is huge. I think we all should appreciate what she has done because I have learned that it’s on us to manage our illness. I realized when I was a teenager that no one can carry my load and that means that they can’t manage it for me. No one can know what it’s like to be you, and because of that I don’t let anyone tell me I’m faking, exaggerating, not that bad, or not in pain.

Saturday, September 26, 2009

Mission Statement

The blog is entitled Sickle Cell Can Kiss My A** and it is a positive and yet progressive platform for me, a sickle cell patient and advocate to explore all realms of thought into sickle cell. There is so much that sickle cell warriors go through (I refuse the term sickler, since having a condition like diabetes doesn't label one a diabeters, or cancer doesn't label one a canc-ler). Sickle cell warriors are in a constant fight on a day to day basis to keep ones head above water, deal with the pain, make the right decisions in life, deal with finances, medical bills and handle the backlash, negative vibes and criticism that having sickle cell brings.

But not everyone can have an attitude of gratitude; and not everyone that has sickle cell is a Christian. My life hasn't been easy with sickle cell, and yet, through all the adversities, I've been able to overcome and live my life to the fullest potential. I'm a registered nurse, have a wonderful family of my own, working on my Master's degree and holding down a full time job. All with sickle cell. My message is that sickle cell doesn't have to own you, you are not defined by your diagnosis and you can live a rich and fulfilling life with sickle cell.

Telling sickle cell to kiss off (or kiss ass), is merely an expressive, a snub to the condition that threatens to overtake ones very existence. Though not the choicest of phrases, many people resonate with this survivor mentality and attitude. Sickle cell is not a walk in the park, it's not roses and cream, it's hard, it's a struggle and only the toughest survivors can cope without wallowing in self pity, depression or emotional lows.

Painting life pretty, ignoring the tough side, and trying to hide the pain and agony that we go through on a daily basis hasn't helped with public awareness--- it's only proliferated the mentality that sickle cell warriors are 'fakers, drug addicts, lazy, malingerers'. I don't bring sickle cell down, I don't make fun of my sickle cell warriors, I just talk about the other side of it...the real side of it. The hard side of it, that all sickle cell warriors go through but don't have anyone to relate with about it.

The public doesn't understand what we go through because NO ONE WANTS TO TALK ABOUT IT. If we don't talk about it, how will they understand? I started my blog because I couldn't find a blog that told the truth...a space that talked about the daily rigors of living with sickle cell. I've talked about relationships, work, sex, exercising, swimming, flying, fear of overdosing, hallucinations...the grittier parts of life that every sickle cell warrior goes through but no one wants to share. Other sickle cell warriors all over the world can relate to this, we are all fighting the same struggle and going through the same things.

There are many people isolated and stigmatized in the sickle cell community, in the USA, and in almost every tropical nation in the world. I've had emails from readers in Islamic countries, South American, Africa countries---even Indian and Asian populations have reached out to me, sharing their stories and building a community. Everyone has their mission, and perhaps the way I speak might rankle nerves; but I'm blunt, unorthodox, unconventional, and very happy to share my sickle cell testimony with the world.

Sickle Cell Disease Stamp ---Do Your Part!


In 2004 the Sickle Cell Disease Awareness Stamp was created as a part of the U.S. Postal Service's stamp program that celebrates the people, events and history of our nation. It also served as another way for the U.S. Postal Service to continue its tradition of raising public awareness of health and social issues.

Many stamps have been created to support causes. However the only stamp that has gone semi-postal is the Breast Cancer Research stamp. Semi-postal means that the stamp will be priced at a higher price than the current stamp price and the difference goes to the organization as a fundraiser.

With the 100 year anniversary that sickle cell was discovered in the Western world approaching in 2010, we would like to have our stamp reissued as a semi postal stamp. Please write letters to the U.S. Postal Stamp committee requesting this action and include what it would mean to you! It is time for sickle cell disease to have more recognition and this is one way to raise awareness. We all need to take ownership of this project and see it through to the end. The Postal Service needs more business, so after the stamp is reissued we need to make a commitment to support it by visiting the post office and keeping the demand for the stamp high as possible.

Please do your part to make the 100 year anniversary a major milestone in history. The publicity and the public awareness will take sickle cell disease back to our level of prominence as an important health issue that affects everyone!

Shirley Miller
SCDAA Board Member

Sunday, September 20, 2009

True Life ---I Have Sickle Cell

Hey guys, MTV's True Life is doing a story on " I have a life altering ailment or illness." If you are interested getting our story out there then you need to send an e-mail to seriousillness@mtvn.com. You should include your name, location, phone...etc. Let's make sickle cell known to the folks at MTV~!

Thursday, September 17, 2009

Sickle Cell Test Plan by the NCAA

This article was shared at the NING sickle cell forum. The content itself wasn't bad, it just stated that the NCAA was considering mandatory screening of all players to prevent those that have sickle cell trait from adverse health outcomes.

The premise of it sounds pretty good, screen all players to protect the ones with sickle cell trait from dying or passing out due to grueling workouts; but for some reason, I can totally see the potential for this becoming very, very bad.

Remember in X-men, when they started 'screening' mutants. And then it turned out that they were creating a database to segregate them with? That's what I first thought of on reading this article. I can understand why some people are alarmed with SC trait players collapsing or dying, but if you link the sickle cell trait to this; then you are automatically increasing the stigma that sickle cell patients already have. You're pretty much saying that because we have this trait, we aren't going to be good enough to play sports with the 'normal people'. This article really rubbed me the wrong way.

We are supposed to end the discrimination not further perpetuate it. I would like input though...am I going off on a tangent here? What did you think about it?

I just have to add this quote that was towards the end of the article:

The United States has a long history of discrimination against people with sickle cell trait, said Troy Duster, a sociologist at UC Berkeley and New York University. In the 1960s, people who tested positive weren't allowed into the Air Force Academy, and into the '70s people were denied insurance or certain jobs, he said.

It's irresponsible to screen people when there's little scientific evidence that the gene causes death and no specific precautions athletes can take to protect themselves, Duster said.

So what are your thoughts? Speak on it

Wednesday, September 16, 2009

Taking Nicosan and Hydroxyurea

I got a question today that I couldn't answer.

Has anyone taken Nicosan WITH Hydroxyurea?

Did you notice a difference?

Have you had any side effects?

Please share your story, either via comments or through my email.



So September is Sickle Cell Awareness Month...I'm sure many of you already know.

I've been out of the SSA loop for a minute but so many of my readers are going through crises right now that it's breaking my heart. I'm sending warm hugs via cyberspace to everyone that is dealing with a crises or some medical dilemma at the moment. Stay strong, keep fighting, and know that this came to pass.

In other news, I'm in a funk today, I seem to be attracting drama everywhere I turn. My home life is great, my personal life is wonderful...but everything else? DRAMA-VILLE. The Irony of it is that I usually shirk confrontation and play the peace-maker role. So getting in the middle of all kinds of conflict is new to me...and it's freaking me out.

Please send some good vibes my way. I seriously need it.

Friday, September 4, 2009

Nicosan and Lab Levels

Questions: How long does Nicosan take to boost the HB level? Do you have a patients record or blood test results where I can actual see the improvements?

Answer: It took me about 3 months before my Hgb got a boost, but even then, I just went from my normal baseline of 8.5 to 10.6. I've been hanging in the 10s ever since. I don't have any clinical documentation on this but this is just my personal experience. Nicosan has no claims of improving the blood levels, it just helps to reduce the sickling of the cells by introducing more oxygen into the red blood cells and helping them to retain their round shape. Less sickling means less cells are dying every 10 days, which means less jaundice, and slightly less anemia.

Nicosan doesn't function to increase your HgB levels. The primary function of Nicosan, is to introduce oxygen into the sickle cells allowing them to retain the normal round red blood cell shape. The anemia is a by product of having sickle cells that die every 10 days versus healthy cells that live for 90-120 days. The overall value of Nicosan is that since the red blood cells aren't the sickle shape anymore, they aren't clumping together, hence less pain and less crises. I didn't notice an increase in my HgB values at all...and now, I'm still technically 'anemic' 10.8 at the highest; but don't have any pain, and don't have any crises. Nicosan does not work to reduce the anemia...it works on stopping crises and pain.

Thursday, September 3, 2009

Getting Lab Work with No Insurance

Question: How can I order lab tests if I don't have insurance?

In regards to initiating your own blood tests, you can walk into a pre-employment or non-emergent clinic, and pay the doctor to order it for you. You have to pay for the labs themselves, and the doctor visits, it will come to around $200-$300 for both I believe.

Try http://www.questdiagnostics.com/...there should be one around you somewhere. Or any clinic that does pre-employment screenings, immunizations and drug tests. They are generally not as busy as 'regular' medical clinics and they have an in house physician, PA or NP that can order the labs for you. Then you take the slip to the laboratory and have it drawn, and you will have your results either called in or mailed to you. You have to pay for everything up front though...and depending on what you order, it can get pretty pricey. I've done this only once...it was $75 to see the doc and the labs I wanted were $135. Ask about the prices before you commit and make an appointment before you go so you aren't waiting for too long.

Great question!

Tuesday, September 1, 2009

Nicosan and Tylenol

I ordered some for my fiancé and noticed it says u have to be careful when taking it with Tylenol. Which is in about every pain med used except a couple. What problems can you have using Tylenol and Nicosan together do u know? I know you aren't a doctor but if you know anything about it I'd appreciate it.

The only thing that I've found regarding Tylenol and Nicosan is that Tylenol increases the concentration of Nicosan 'en vivo'. This means that Tylenol increases or enhances the Nicosan effect. If she is still on Tylenol all the time with Nicosan, then I would recommend switching to the Children's dose (240mg) instead of the adult 350mg dose. Personally once Nicosan starts working for her, I think her Tylenol intake would decrease rapidly. When I first started, I didn't know about this interaction, and I still took a lot of Vicodin/Tylenol and Norco. Now I still take Tylenol once in a while when I get period cramps or a headache, but haven't noticed any changes in my labs or my physiological response. I don't think it will hurt once in a while. But if after being on Nicosan for several weeks, she's still chronically using the Tylenol products, then definitely have to switch to the Children's dose.