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    Amanda Vassall May 20 2018 8:15 pm

    Recent conversations on the SMART Social Wall have driven me to post this article about sickle cell and the emergency room. Giving medical professionals more adequate training could aid in spotting the difference.

    "In light of the current opioid crisis, ED staff have become much more vigilant in monitoring suspected drug abuse. This can have particular implications for people with sickle cell disease (SCD), whose top reason for visiting the ED…Read more

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    Paul Braxton May 19 2018 2:15 am

    The most offensive and demeaning notion in medicine today is that people with SCA are inherently drug seekers, and are untruthful and problematic as patients. Don’t you believe it. Medical practitioners peddle this lie to cover over their lack of fidelity in addressing SCD for over 100 + years. Society cynically peddled the lie that SCD is a disease of Black people and white people need not be concerned about SCD. That’s a crook and those who…Read more

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    Granny Nancy May 19 2018 12:36 am

    I think it's more than just stigmas associated with clinical trials. In my mind, the terrible treatment that our folks experience in the ER makes them very distrustful of the medical establishment. People worked hard to establish the NIH guidelines, yet those guidelines are often ignored. If Pfizer, ASH, and others can work to retrain doctors, make them aware of implicit bias and help them use the latest protocols we might have a chance. Unt…Read more

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    Amanda Vassall May 17 2018 3:31 am

    Sickle Cell Groups, Pfizer Work to Bring African-Americans into Clinical Trials Pfizer, with the help of SCDAA, is trying to eliminate the stigmas associated with clinical trials in the African American community.

    “Until more African-Americans participate in clinical trials and assist in the process of drug development, we will continue to have only two FDA-approved drugs for sickle cell disease,” she said. “I see the value in partnering …Read more

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    Amanda Vassall May 13 2018 12:31 pm

    Happy Mothers Day! We asked who is the person who has helped you most through your SCD journey and you answered. The mommas have it! From all of use here at oneSCDvoice, thank you to all the moms.

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    Amanda Vassall May 13 2018 12:29 pm

    The moms have it!! We asked the community and you all answered. Thank you to all the hardworking, resilient, compassionate and understanding mothers out there this Mother’s Day. We love you!

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    Shirley Miller May 11 2018 12:36 pm

    On this 2018 Mother's Day I want to wish that all mothers have a blessed day on Sunday and enjoy your family and friends. Especially those mothers who cried for us when we were in pain and kept us close even as we became adults. My Mom still today wants to know if I am hurting. The only difference is today I wouldn't tell her if I was.

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    AnGuobaMD May 9 2018 12:18 pm

    Given the age of your son who need the Bone Marrow Transplant, He has more than 98% potential success madam. Your son not taking this chance, will be unforgiving; knowing what Sickle Cell Disease complications await most patients as they grew older. Please encourage your son to take the cure chance. All things been equel , he has a lot of useful years a head of him. God Bless your Family.

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    tbrinkley May 8 2018 9:43 pm

    Any experience with Full Sibling Match for Bone Marrow Transplant? My 29yo daughter is a match for my 21yo son. Weighing risks and potential success options with new low radiation course. My son has had ACS 2x and blood transfusions 3x, but seems to be getting more frequent pain crisises now. Any personal experiences?

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    Lewis Hsu May 7 2018 4:18 pm

    I like this description of prescription glutamine for sickle cell disease: "There is an amino acid that helps with pain: glutamine. This is a naturally occurring amino acid that is used by your body for many functions, including making proteins. It is also an anti-oxidant, and that is the function that makes it helpful in sickle cell disease. It is not 100% effective and is most effective in people who take hydroxyurea or are children. Don…Read more

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    Shirley Miller May 7 2018 2:40 pm

    My Mom who is now 92 years old and still drives herself to church, is my inspiration. She always encourages me to not limit myself and to do anything that I want to do. She tells me she is proud of me and my many accomplishments because she knows where I started and the challenges I had to face because she was right there with me!

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    Nasike Wafula May 6 2018 8:12 pm

    She's a beautiful pearl special n one of a kind. She has prayed, had sleepless nights, encouraged me day on day out n above all she has never stopped believing in me. I love her may she live long

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    Amanda Vassall May 5 2018 7:25 pm

    In honor of Mother’s Day, we’re asking you to tell us how your mothers have played an important role throughout your SCD journey. In the past, many of you expressed your mothers were some of your biggest supporters, so tell us WHY! 😄😄 Submit your stories in the comments below all week!!

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    Ace123 May 5 2018 2:08 am

    Hey SCD patients, parents and carers, while reading up on management and treatment for SCD some years back, I was amazed to learn that hydroxyurea / hydroxycarbamide has been the only drug used for the management of SCD for over 30 years. I was a bit gutted that not much effort and research have gone into finding a cure (except for a bone marrow transplant, which in most cases poses more problems than SCD itself) and concluded that the reason for…Read more

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    Ace123 May 3 2018 8:26 pm

    Hi everyone, I hope you’re all coping well? Just need some information on the benefits, if any, of taking regular hot sauna baths for SCD. My boys and I were on holiday last year and I took them for a sauna, the regular one and not the infra red sauna, and they enjoyed it and didn’t seem to suffer any ill effects. Though I made sure they drank lots of water in between to stay hydrated. We will be going on holiday in the summer and I want to m…Read more

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    Joy Hoffman May 1 2018 6:43 pm

    My 10 year old Zambian daughter has SCD. She lived the first 7 years of her life suffering without the knowledge that she had the disease. Since being diagnosed she has done much better in terms of pain crisis. However, we just discovered that her spleen is no longer functioning. The doctors here say it must be removed. I am planning to take her to California for assessment and a 2nd opinion (best to avoid Zambian medical care if possible!) but, …Read more

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    Ace123 May 1 2018 5:07 pm

    Finally I somehow managed to retrieve my password and can start contributing. I’m pretty excited to be on this forum as a parent with two boys who have sickle cell I can’t get enough material. And I find this forum refreshing because it’s not all scientific, there’s a genuine attempt to input a bit of fun into the discussions which is therapeutic in it’s own way. My family is based in England, so we do have a robust proactive health car…Read more

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    Vivian Okwuagwu May 1 2018 3:55 pm

    Attended the World Orphan Drug Congress USA last week as an SCTPN Delegate.
    Very heartened by advances in gene therapy, and pleased to see so many patients/advocates attending, especially from the Sickle Cell community.
    Nothing about us without us!

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    Amanda Vassall May 1 2018 12:50 am

    Who has dealt with iron overload? Read this article on the consequences and management of iron overload in sickle cell disease.

    "Therefore, only when repeated blood transfusions are given does iron overload develop in SCD."

    https://www.onescdvoice.com/education-and-research/consequences-management-iron-overload-sickle-cell-disease/

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    Amanda Vassall Apr 29 2018 1:19 pm

    Did you see last week's Sickle Cell Trivia about genetics? Did you answer correctly? Here's a helpful article on sickle cell trait.

    "If both your parents have the problem gene, you have a 1-in-4 chance of being born with the disease. People with sickle cell trait (SCT) have one normal hemoglobin gene and one abnormal hemoglobin gene. If both your parents carry the sickle cell trait, you have a 50% chance that only one of them will pass it on…Read more

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