Sikcell: People living with Sickle Cell

We still Hope

Blood Count

I was in the hematologist/oncologist office the other day and over heard the nurse telling a cancer patient about her blood count and it was much higher than mine. I understand cancer is a big deal as a matter of fact I have an aunt that's dying of cancer as we speak but if a cancer patient's count is much higher than mine than when are they going to start to believe that SCD is a deadly disease and deserves as much research as cancer. I hope I haven't offended anyone. It just gets frustrating because ALOT of people are naive to SCD....Don't mind me...just venting!

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Comment by Lorena Madrigal on June 27, 2013 at 9:14pm: I agree 100% that the public needs to be better educated. But what about the medical curriculum? Many doctors learn that sickle cell trait (just carrying one gene) does not have any symptoms. Well, this is not true, and there have been several deaths of college football players due to their condition. These are top athletes in exceptional good shape, yet they die. The problem: This has not been researched at all!

We are conducting a study on current or former sickle cell trait football players to determine if there are genetic differences between those who experience difficulty during excertion and those who do not. It does not matter at what level you played or if it was decades or months ago. We have placed articles written about the study and interesting links here: https://www.facebook.com/pages/Sickle-cell-trait-carriers/542105535...

If you are ready to enroll, please go here: https://www.facebook.com/sicklecell.carriers

Comment by Sickle Cell Warrior on September 30, 2009 at 2:15pm: I'm with Ali...the more we educate, the more the general population can understand what we are going through. SCA is NOT going anywhere, and even though it's an orphan disease (since according to the FDA, not that many people are affected by it compared to the general population), the people it does affect, it hits us hard. WE need to keep on raising our voices to increase awareness.

Comment by Ronald Ragin on September 29, 2009 at 10:00pm: I was informed that because our disease affects such a small percentage of the population that the funding sources are not going to be there. That is why we must advocate a cure for SCD. There are foundations who advocate for us but are losing funding because of the economy. We should be at each State Capital during the budget request periods and advocate in conjunction with those foundations. Write to your Congress person on the state and national level in conjunction with your nearest foundation. We have to be more involved.

Comment by Keenan Murray on September 29, 2009 at 8:47pm: hey i feel all of ya, i used to not even tell my friends i had SC and sometimes still dont, depending on the person, i mean like i dont wanna just go around lettin evrybody know i got SC cuz they might think im lookin for sympathy u know? but yea thats kinda messed up, SC deserves as much awareness and care as cancer does, and then your not even born with cancer so whats up with that.

Comment by Trish on September 25, 2009 at 8:31am: Thanks everyone for your comments and I'm sooooo glad Im not alone!

Comment by Marcus McKinley on September 23, 2009 at 10:54pm: My hemoglobin usually runs a 10 higher than that and i'm feeling excellent, lower than that....well pain. But Trish I do agree with you.

Comment by Ali on September 23, 2009 at 10:44am: I understand your frustration. The general public is unaware about SCD. Sometimes I get tired of explaining it to people. But at the same time, I remind myself that I must explain it because people need to know about the disease.