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  1. Sickle Cell Trait Needs More Awareness, Too (Part 1)

    November 26, 2014 by Andrea


    We all know about the intense, debilitating pain associated with sickle cell disease crises, as well as the other effects SCD has on its warriors. However, while the general consensus is that the sickle cell trait is harmless, carriers are also at risk for certain complications.  According to a 2009 article in The American Journal of Medicine, entitled "Complications Associated with Sickle Cell Trait: A Brief Narrative Review," it states "Although largely a protective carrier state, sickle cell trait is associated with rare but fatal renal medullary cancer, exercise-related deaths, splenic infarction [when oxygen supply to the spleen is cut off], hematura, hyposthenuria, venous thromoembolism [blood clot], complicated hyphema [blood in front of the eye], and fetal loss." 

    In this first part of our sickle cell trait mini-series, we'll be exploring how people with the trait are at a higher risk for kidney disease -- especially within the African-American community.

    As reported by Reuters Health, African Americans who carry the sickle cell trait are 60 percent more likely than those without the trait to suffer from kidney disease. “The theory is that under very highly stressful situations (such as a low oxygen levels) . . . there may be some localized sickling that happens in the kidney that is leading to functional impairment,” Dr. Rakhi Naik, the head of this research, told Reuters. 

    While chronic kidney disease and end stage renal disease tend to be found in older adults with the sickle cell trait, other kidney-related complications can strike earlier. Just ask 23-year-old Shawniece Wilmore. After experiencing lower back pain for six weeks or so, she went to the doctor only to find out that she has renal medullary carcinoma. "Renal medullary carcinoma is a rare, aggressive tumor of the kidney that is seen almost exclusively in young individuals with sickle cell trait."* Only three patients have been known to survive this type of cancer, with the longest survival time being recorded as eight years. 

    Other kidney-related complications that may arise in those with sickle cell trait are*:

    1) Hematuria. The most common complication for those with sickle cell trait, hematuria is the occurrence of blood in the urine. 
    2) Hyposthenuria. This happens when the kidneys become unable to produce concentrated urine. 
    3) Renal papillary necrosis. This is a kidney disorder in which all or part of the tissues around the collecting ducts die.

    With 1 in 12 African Americans carrying the sickle cell trait, it's important to also raise awareness about its potential complications, in conjunction with raising awareness for sickle cell disease. 

    Next week, we'll be discussing Part 2 of our sickle cell trait mini-series: sickle cell trait and the risks to athletes and military recruits. Be sure to check back for that post, as well.


    Are you a carrier? Have you experienced any complications? Share your story in the comments below!  

    *2009, The American Journal of Medicine: "Complications Associated with Sickle Cell Trait: A Brief Narrative Review"

  2. The Single Cell Phone App Every Sickle Cell Warrior Needs Now

    November 14, 2014 by Andrea


    You can use your cell phone to call your friends, check the weather, chat on social media, buy movie tickets, play games, and even get a date. And now, you can also use your cell to get better care during a sickle-cell crisis. 

    Say hello to the new VOICE Crisis Alert App, which is bringing sickle-cell care into the 21st century. 

    Dedicated to empowering adults and kids with SCD, this new app makes recording and communicating pain events easier than ever. Here's how it works: Simply download the app to your Apple or Android smartphone or tablet device, enter important contacts (think family, physicians, friends), track your pain, and relate that pain to your selected saved contacts via text or e-mail. 

    "The user can track pain at each site on the body, and identify pain intensity on a scale of 1-10," explains Shondrella Avery, the VOICE Crisis Alert spokeswoman in the video above. 

    "[With] a few touches of your phone, you can alert everyone about how you're feeling," says one user, also seen in the video. 

    What's more, this app doesn't require any login information or WiFi -- everything from your contacts to your pain history (which is saved for up to 90 days) are kept directly on your device. You can also personalize your avatar (skin color, hairstyle, clothing, and more). 

    Have you -- or will you -- use this app? What do you like most about it? Tell us in the comments below! 

  3. 13 Books Every Sickle Cell Warrior Should Read

    November 8, 2014 by Andrea


    There’s nothing better than the satisfaction of reading a really good book — especially when it's a book with a voice that understands your struggle and fills you with inspiration, hope, and understanding. 

    Here's a list of 13 books — in no particular order — that every sickle cell warrior should read. 

    1. Now You See Me, Now You Don't 

    2. I Only Cry at Night 

    3. Hope and Destiny: The Patient and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait 

    4. Menace In My Blood: My Affliction With Sickle-Cell Anemia 

    5. In the Blood: Sickle Cell Anemia and the Politics of Race (Critical Histories) 

    6. Meet Camden: Living with Sickle Cell Anemia 

    7. Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health 

    8. Medikidz Explain Sickle Cell Disease: What's Up with Casey? 

    9. Little Tree: A Story for Children with Serious Medical Problems 

    10. The Brave Souls Club 

    11. My Daughter's Journey with Sickle Cell Disease 

    12. Lenabell: A Doctor's Memoir of a Remarkable Woman's Eighty Year Battle With Sickle Cell Disease 

    13. My Brother Has Sickle Cell 

    Did we miss any of your must-reads? Add them in the comments below! 

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