UEO Sickle Cell

Supporting and empowering Kansas City families affected by sickle cell disease. MY CAUSE MY CLEATS:

[UEO Sickle Cell @UEOSickleCell]

A simple ultrasound can help keep a child with sickle cell from having a stroke. 🧠 A yearly TCD from ages 2 to 16 finds the kids at risk, and transfusion cut first strokes by over 90%. Fewer than half get screened. Ask your child's care team.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

There's no office building behind this page. 🤝 The Uriel E. Owens Sickle Cell Disease Association was founded in KCK in 1981, 45 years ago, and it's run entirely by volunteer board members. Share this so another family can find us.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

For most of this disease's history, "cure" wasn't a word anybody said out loud. ✨ In Dec 2023 the FDA approved the first two gene therapies for sickle cell, ages 12 and up. Not simple, not for everyone, but real. Ask your hematology team.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

If you only remember one number, make it 60. ⏱️ The American Society of Hematology's 2020 guideline: sickle cell pain assessed and treated within 1 hour of ER arrival, rechecked every 30 to 60 minutes. Screenshot this for next time.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

Two warriors, same diagnosis, completely different lives. 🕯️ Sickle cell isn't one disease: HbSS, HbSC, HbS beta thalassemia and rarer types each show up differently. Your story is yours. Share this with someone who thinks it's one thing.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

1 in 13 Black babies in the U.S. is born with sickle cell trait, and most never know. 🧬 Two parents with trait means a 1 in 4 chance per pregnancy of a child with sickle cell. One blood test answers it. Ask your doctor.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

"I'll schedule it after this crisis." 🎀 The USPSTF now recommends a mammogram every other year from 40 to 74, and about 2,670 men will be diagnosed this year too. Ask your care team how to fit screening into your sickle cell plan.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

Nobody tells you what happens to your body AFTER the hospital stay. 👟 Every crisis costs strength, and sickling in the hips can damage the joint itself. October is Physical Therapy Month. Ask your care team whether PT belongs in your plan.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

"How are you?" "Good, you?" Tomorrow is World Mental Health Day. Ask a warrior how they're really doing, then stay for the answer. If it's heavy, 988 is free and confidential, any hour. Check on one person today.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

"I'm fine." In the PiSCES study of 232 adults with sickle cell, 27.6% were living with depression, and they had pain on 71% of days vs 50% for everyone else. Mental health care is sickle cell care. Ask your care team at your next visit.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

A water bottle on a desk shouldn't be a battle. 🎒 Section 504 is federal law, and the Dept of Education's 2024 fact sheet names water, restroom and rest breaks, make-up work and modified PE for kids with sickle cell. Need a 504 plan? DM us.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

Your red blood cells live about four months. A sickled one? Two weeks, tops. 🩸 That's why a warrior's tired is different from your tired. Share this with the friend who always shows up.
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

September's ending. Sickle cell isn't. Carry this forward: when somebody tells you they're in pain, BELIEVE THEM the first time. Awareness has an end date. Advocacy doesn't. ❤️
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

Thank You, Vertex!♥️ Our Champion Sponsor for the 16th Annual Steps for Sickle Cell Walk on Sept 19. Thank you for walking with us and being part of our 45-year legacy!🎉
#ThankYouVertex #StepsForSickleCell #45YearsOfUEO

[UEO Sickle Cell @UEOSickleCell]

One share. That's it. That's the whole ask. Stigma grows when a story goes untold and people fill the gap with assumptions. Every real story replaces an assumption with a person. 📣
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

A special thank you to Drunken Fiddles 🎻 They brought violins and cellos to our 16th Annual Steps for Sickle Cell walk on Sept 19 and filled the morning with live music. Thank you!
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

100,000 Americans live with this. Most people can't name ONE symptom. Sickle cell is the most common inherited blood disorder in the US and one of the most underfunded for its size. Awareness changes funding. 🌍
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

Ever had to cancel on your friends AGAIN? If you live with sickle cell you know that specific kind of lonely. Community is the counterweight. Tag somebody who's shown up for you. ❤️
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

Not all sickle cell pain shows up on a scan. Depression and anxiety are more common in people living with SCD, and both are treatable. Mental health care belongs in the care plan. 988 is there any hour, free and confidential. 💙
https://t.co/sSk6hXPo9B #SickleCell

[UEO Sickle Cell @UEOSickleCell]

Real talk: somebody's next good month is sitting in a blood bag right now. Patients do best with closely matched blood, which most often comes from donors of the same background. Black donors are essential. One hour. 🩸
https://t.co/sSk6hXPo9B #SickleCell