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

Seizing the Day...

Hello everyone!

How are you enjoying the summer? I'm doing great, having all kinds of fun in beautiful Portland. Summer is the only time that it's beautiful and not raining in Portland, so I might as well savor it right?

I've started my exercise regimen again and this time I'm super dedicated. I'm doing a mix of yoga on alternate days with strength training and aerobics. I want to throw in some pilates as well, but I will be building up to that.

I read this super awesome book by Amy Dubois Barnett that I would love to recommend to the ladies in the house. It's titled "Get Yours" and it's an inspirational/self help that encourages you to eliminate aspects of your life that don't make you happy and really set goals and achieve them. I'm working on my affirmation list right now (will share soon) and it's inspired me to do more and clean up shop.

You can be happy in your life no matter what situation you are in, because happiness begins from within. I've met so many people with sickle cell that are the happiest people, sure they have pain, but they are radiant and full of life. I know that it can be hard sometimes when the pain gets you down, and when the negativity of the hospital admissions, and your family stress weighs on you. But part of being a Warrior is that you have to be able to deal with all the stress, and come out on top, ready to fight another day.

Please seize the day and stay happy. Find things that make you happy, take time out for you, and set goals for yourself. Sometimes the only goal that I have is to clean up a room in the house, or wake up early...it doesn't matter what your goals are; the main thing is that you are doing something everyday to accomplish them.

Okay, I'm getting off the soapbox now...off to yoga...ciao!

Swimming with Sickle Cell

I got a question from a reader in Egypt that loves to swim but has a painful episode after each swimming session.

For sickle cell warriors, my advice is not to swim in cold water. The main thing about swimming is that it drops your core body temperature, increasing the work load of your circulatory system to keep your internal temperature in a good range. In addition, you are probably decreasing your oxygen saturation with the exertion. If you go scuba diving or into the deep sea, the atmospheric pressure underwater drops and this decreases the ability of your hemoglobin to hang on to oxygen---all in all not a good recipe for a sickle cell survivor. In fact it's a direct trip to pain city, not passing go.

There are alot of people that just love the water, my guy is one of them. He's most comfortable when he's wet and just loves anything related to water. My suggestion is to try a heated pool, jacuzzi or swimming when it's warmer. Besides that I recommend the usual, hydration, taking your pain meds and avoiding stress. Personally I don't swim anymore, it's just too painful. If I must I wade in the water, but only for a short period of time and then I'm back on the beach warming up.

Milan told me she got invited to the beach and had to make excuses why she couldn't go. Personally I love to frolic on the beach, watching people, playing games, having a great time and enjoying the sun. So don't let sickle cell limit your life to that extent, go to the beach, just know your limitations regarding the water.

Exercising with Sickle Cell Anemia

My newest fetish is hitting the gym. I love going to the gym. My doc says it's okay as long as I hydrate and don't overdo anything. There is something about pushing my body to it's limit that makes me feel absolutely invigorated. As the blood pumps through when I'm doing my cardio, I can almost imagine that it's clearing out the sickle cells and just keeping the veins nice and free flowing. I want to believe that exercise helps.

I read somewhere that it takes 12-18months to grow new veins. I'm working out my arms in the hope that it will be able to re-surface better veins so I don't have to be stuck a million bajillion times when I do go to the hospital. I know people about the PICC lines and portacaths, but for some reason, I haven't gotten to it yet. I'll talk about that later.

So yeah, back to the gym, I'm already feeling the difference in the definition of my arms and muscles. I feel strong, I feel vibrant, I feel like a warrior princess. Bring it on world, I can handle anything!

Exercise & Diet

One of the perks I guess of having sickle cell is that it keeps me in my ideal weight zone. My BMI never goes above 20, mainly because when I do start gaining weight...one crises has the power of taking off 10 pounds in a week. Right now I'm a luscious 135...my ideal weight for my height but I know that in the next few months I'll be down to 125 and trying to eat my weight up.

So I guess you could say it's our own little weight loss plan...hahaha. I do exercise though, because I love exercising, it gives me endorphins...and endorphins supposedly make you happy. Don't I sound like a ray of frickin' sunshine? Plus I'm trying to build up the muscle tone in my arms, so that I start having nice veins once again. It takes 12-18 months for the body to create new venous pathways, so I really have to tone up those arms hardcore.

I read somewhere that yoga is really good for people with sickle cell. This is I guess because all that stretching helps move those clumpy cells all around the body and away from the problem areas. I think I might take it up soon, and consult my own little investigation.