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    Amanda Vassall Aug 18 2018 1:44 pm

    5 Facts You Should Know About Sickle Cell Disease School is starting back (if it already hasn't)! Consider sharing graphics like this with your children's teachers, your teachers or professors. The more people know the better they'll understand.

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    AnGuobaMD Aug 17 2018 6:22 am

    Sure, Scuba Diving, High altitude mountain climbing, Travelling in an unpressurized plane, exercising under extreme conditions; hot or cold; people with Sickle Cell traits that find themselves in any of the above aforementioned conditions, can be quickly subcunned to suddened respiratory distress, Heart attack, Acute Renal infarct, lost of consciousness, and even sudden death.The common thread that cut through all of these conditions is reduced …Read more

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    Danielle Jamison Aug 16 2018 7:48 pm

    Attending the Sickle Cell Disease Implementation Consortium: Steering Committee Meeting at the NIH Campus in Maryland. I am the patient stakeholder representative for my hospital, Medical University of South Carolina.
    The consortium was created to focus on:
    1. Develop a SCD Registry, in collaboration with other clinical centers and the NHLBI
    2. Conduct a needs assessment of the barriers to care for people with SCD.
    3. Design intervention proto…Read more

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    Shirley Miller Aug 16 2018 7:09 pm

    Just returned from the NHLBI Clinical Research Meeting at the NIH. The Sickle Cell Adult Provider Network symposium was focused on Care for the Older Adult with Sickle Cell Disease. The subjects covered were, Management of End Organ Disease in SCD, Cardiopulmonary Complications of SCD, Ophthalmologic Manifestations of SCD, and Palliative Care Approaches to the Management of SCD. Quite impressive!

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    Saku Aug 16 2018 6:55 pm

    Hello all. I am posting a link to a clinical trial in case you are interested.
    https://clinicaltrials.gov/ct2/show/NCT03249831

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    Raoshen Aug 15 2018 8:30 pm

    What they make you sign at Johns Hopkins Sickle Cell Clinic. What do you think?
    (3 pages total)

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    Carolyn Rowley Aug 14 2018 4:24 pm

    Good morning everyone. Reminder that the 10th Annual Sickle Cell Disease Educational Seminar is quickly approaching. The dates are September 6-8, 2018 at UC Davis Medical Center, Sacramento, CA. Online registration and the program agenda can be found at http://www.cayennewellness.org Featured keynote speakers are Drs. Elliott Vichinsky and Cage Johnson. This year's theme is Integrative Medicine and Pain Managment. Topics include: nutrition, …Read more

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    andreharris Aug 13 2018 11:27 pm

    Hello Everyone!

    I am André Marcel Harris, and I am a Sickle Cell SS patient. I am 29 years old and I am currently finishing up my Bachelor's in Social Work. I will be applying to PhD programs this Fall, to potentially start Fall 2019. As a new social science researcher, my interests are aligned with social determinants of health and health equity in Sickle Cell Disease care. My goal is to conduct research from a sociological perspective about…Read more

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    Amanda Vassall Aug 12 2018 2:37 pm

    A very special shout out to Ashley V. for becoming a finalist in the RareVoice State Advocacy: Patient Advocate Award!!! Your work with Sick Cells doesn't go unnoticed. Amazing job!

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    Amanda Vassall Aug 12 2018 2:35 pm

    A HUGE thank you to Shabreon and Shamonica for manning the oneSCDvoice booth in TN last week! We appreciate your support. Also, a big thank you to YMC for presenting about oneSCDvoice. Amazing job! Shamonica Wiggins Shabreon Howard ♥️

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    Sanwalker Aug 11 2018 9:06 pm

    Living the sickle cell is not an easy thing. One thing that we must do is never give up. Hopefully one day sickle-cell will get the attention that it definitely deserves!! Don't let the disease overtake you... You overtake the disease.

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    FASC Aug 9 2018 3:14 pm

    Goodmorning everyone my name is Lache Pouncey, I’m co-funder of Fight Against Sickle Cell we are a nonprofit organization. we are currently trying to branch off and would love for everyone to help us do that from our beloved community please feel free to visit our Facebook page Fight Against Sickle Cell Thank You

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    Lewis Hsu Aug 7 2018 10:09 pm

    Day 4 at Camp North Star Reach: "Make your counselor look like a marshmallow!" I think that was the name of the challenge to the younger kids. Campers swarmed around 3 laughing counselors with plates of shaving cream and handfuls of shaving cream to coat each one like frosting a cake. I decided to get into the action also and sat down in the throng. I ended up with a tall Mohawk hairdo made of shaving cream.

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    dlow shared Lewis Hsu's post Aug 7 2018 12:34 pm

    Day 3 at Camp North Star Reach: I asked a first-time camper, 13 years old, what do you like the best so far? "Everything! I liked archery." And how are you doing with drinking a lot of water? "Good. I had 6 of these water bottles. My pee is clear, almost like water."

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    dreamsicklekids Aug 6 2018 8:52 pm

    Dreamsickle Kids will be hosting a community brunch to discuss Sickle Cell and ways we as a community can be more understanding and better advocates for the social support with providing access to better health care for SC patients.

    We have also partnered with another local community based organization PAAUSEForAutism to hold our first of many Parent Support Meetings for Sickle Cell and Autism in the black community. While there are many resour…Read more

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    Lewis Hsu Aug 5 2018 12:08 pm

    Day 3 at Camp North Star Reach: I asked a first-time camper, 13 years old, what do you like the best so far? "Everything! I liked archery." And how are you doing with drinking a lot of water? "Good. I had 6 of these water bottles. My pee is clear, almost like water."

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    Lewis Hsu Aug 4 2018 12:12 am

    Day 2 at Camp North Star Reach. "I learned to swim today!" says one of my patients, "In the pool, they taught me to float and then kick my legs. Tomorrow they are going to teach me more swimming!" Because cold water is well-known to trigger sickle cell vaso-occlusive pain, the staff has specially warmed the pool to 90 F - 95 F for the week of sickle cell camp. Camp North Star Reach also features a warming hut at poolside to keep campers fro…Read more

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    Lewis Hsu Aug 2 2018 1:28 pm

    I'm camp doctor this week at summer camp for kids with sickle cell /pain management at Camp North Star Reach in Michigan. Rainy yesterday but blue skies today, frogs hopping around, goofy songs before and after breakfast, ready for the first full day of camp activities! Everybody drink a lot of water!

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    TanikaPMeeks Jul 31 2018 9:27 pm

    Good Evening I know I have not been on here for a while. I need some advice or suggestions. I had a bone marrow biopsy today. My back is sore and I am in pained. I need help too my insurance denied the procedures too. I need some medical advice.

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    Amanda Vassall Jul 31 2018 3:48 am

    Hello OneSCD voice family!!

    oneSCDvoice will be exhibiting at the 5th Annual Sickle Cell Patient & Family Education Symposium (the Warrior Convention) next week. Our Working Group Member, Yvonne Carroll RN, JD, will be presenting oneSCDvoice at the Opening Plenary Session, Thursday, August 2 at 9:55 am.

    In addition to Yvonne, Shamonica Wiggins (also on the WG council) will also be representing oneSCDVoice at our exhibit table along with…Read more

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