Uriel E. Owens Sickle Cell Disease Association of the Midwest

10/12/2026

Nobody tells you what happens to your body AFTER the hospital stay. 👟

A pain crisis can mean days in a bed. Every one of those days costs strength and range of motion that doesn't come back on its own, and the next crisis starts from a lower floor. Over years, that adds up.

There's a second problem that's easy to miss. Sickling can happen inside the hip bones, and less often the shoulders, knees and ankles. When it cuts oxygen to the joint, the bone can start to die, a condition called avascular necrosis, and it seriously damages the joint. It's one of the reasons hip pain shows up in warriors far younger than it should.

October is National Physical Therapy Month, and this is the part of sickle cell care that almost nobody talks about. A physical therapist who understands chronic pain and blood disorders can help rebuild strength between crises, protect the joints you have, and make moving feel possible again instead of scary.

Gentle counts. A walk to the mailbox counts. Same warriors, brighter tomorrows starts with one lap.

Warriors, what's your go-to way to move on a good day?

Ask your care team whether physical therapy belongs in your plan.

10/10/2026

Come give blood, next Tuesday October 6!

🏷: WethrYve KC Futures First Uriel E. Owens Sickle Cell Disease Association of the Midwest Project Eagle

10/09/2026

"How are you?" "Good, you?" We've all done the drive-by version.

Tomorrow is World Mental Health Day. It's been observed every October 10 since 1992, when the World Federation for Mental Health started it. Instead of posting a graphic and moving on, we want to ask you to do the one thing that actually works: ask a warrior how they're really doing, and then stay for the answer.

Here's how to ask so it lands. Pick a quiet moment, not the group chat. Say what you noticed: "You've been quiet this week." Ask once, then listen without fixing. And skip every sentence that starts with "at least."

People living with sickle cell rarely bring this up first. There's a lifetime of practice in saying "I'm fine" to doctors, teachers and bosses. Being asked, sincerely, by someone who waits for the real answer, is rarer than it should be.

If the answer is heavier than you expected, you don't have to carry it alone. 988 is the Su***de and Crisis Lifeline. Call or text, any hour, free and confidential. You can call for yourself or for someone you're worried about.

Who's the person you check on?

Check on one person today. Just one.

#988

10/08/2026

👩🏾‍🍳🔥 COME COOK WITH US TOMORROW! 🍽️🫕

Part 3 of our 4-Part “What’s For Dinner?” Fall Cooking Series is happening TOMORROW — and WE WANT YOU THERE!

Last session had 60 PEOPLE cooking, laughing, learning & connecting! So YES… it really IS that much fun! 😂🎉

And don’t forget to take a photo of your delicious creation and send it to our hosts! 📸 You could even WIN A PRIZE! 👀🏆

📅 Thursday, October 8
⏰ 5–7 PM CT
💻 LIVE on Zoom

Hosted by Leebo's Sickle Cell Support Group, in partnership with Dr. Patrise Holden of The Language Key, and Featuring our returning Chef Tanya Gentry of Building Bridges Sickle Cell Disease Foundation !👩🏾‍🍳

Uriel E. Owens Sickle Cell Disease Association of the Midwest is so grateful to be part of this series and to support this incredible work alongside our partners and community.🥰

📣 KC, MO! KC, KS! COME COOK WITH US!
When you join, tell us where you’re joining us from in the ZOOM chat! Let’s SEE our community showing up! 🙌🏾

🛒 Missed the grocery list or grocery stipend this time? Stay connected! Grocery lists and limited $20 grocery stipends will be available for future sessions, with stipends offered on a first-come, first-served basis. Follow our pages and watch for announcements so you don’t miss the next opportunity to COME COOK WITH US!♥️

👉🏾 🔥 READY TO JOIN US TOMORROW NIGHT?!

Register using the link below or visit www.sicklecellmidwest.org for more information.

ZOOM: https://zoom.us/meeting/register/2IBM6VvuSnmHJ6XgPTa5hQ?utm_source=chatgpt.com #/registration

💻COME COOK. COME CONNECT. COME THRIVE. SEE YOU TOMORROW! 🔥

10/07/2026

THANK YOU, BLOOD DONORS!🩸

A heartfelt THANK YOU to everyone who came out yesterday and rolled up their sleeves to help give the gift of life!♥️

Every donation has the potential to make a difference for someone in need — and that person could be a Sickle Cell Warrior. For people living with SCD, blood transfusions and exchanges can be an important part of managing and preventing serious complications. Your donation may mean more than you ever know.🙏🏿

We also loved connecting with everyone who stopped by our table to learn more about sickle cell disease and Uriel E. Owens Sickle Cell Disease Association of the Midwest’s 45-year-and-growing legacy!

A special THANK YOU to Janet Weaver for helping bring this effort together, CCKC, American Red Cross of Missouri and every organization and office that participated and helped recruit our amazing blood-donating heroes!

Thank you for showing up, learning more, and supporting an effort that can truly save lives.🙏Thank You to Miss Virginia Kirkwood, Donna McCurry, Maurice Riddle and Melo Jae for representing at our UEO table!🫡
❤️🥰

45 years of legacy. Still serving. Still advocating. Still building community.🙌

Come give blood, next Tuesday October 6!

🏷: WethrYve KC Futures First Uriel E. Owens Sickle Cell Disease Association of the Midwest Project Eagle

10/07/2026

"I'm fine." Two words that do a lot of heavy lifting in this community.

Here's what the research actually found when it looked underneath them. The PiSCES project followed 232 adults living with sickle cell disease, who filled out a diary every single day for up to six months. Just over a quarter of them, 27.6 percent, were living with depression. And the people who were depressed reported pain on 71 percent of their days, compared with about 50 percent for everyone else in the study.

Read that again. Depression didn't just sit next to the pain. It came with more of it.

That's not a character flaw and it's not weakness. It's what happens to a mind when the body is in pain most days and the world keeps saying you look fine. Mental health care is sickle cell care, in the same sentence, at the same table. A therapist who understands chronic illness. A support group. A hematology team that asks about your mood and not just your hemoglobin.

October 4 -10 is Mental Illness Awareness Week, and the point of that isn't a hashtag. It's permission. If you've been carrying this quietly, you've carried it long enough.

What's one thing that helps your head on a hard pain day?

Ask your care team about mental health support at your next visit.

10/05/2026

Y'all, a water bottle on a desk should not be a battle. 🎒

But ask a parent of a child with sickle cell and you'll hear the stories. The teacher who wouldn't allow bathroom breaks. The PE class held outside in 30 degree weather. The zero on the test that fell during a hospital stay.

Here's what a lot of families never get told. Section 504 of the Rehabilitation Act of 1973 is a federal civil rights law, and in June 2024 the U.S. Department of Education's Office for Civil Rights put out a fact sheet specifically about students with sickle cell disease. It lists the kinds of changes a school may need to make: making up work without penalty after a crisis or appointment, seating away from cold or drafts, rest breaks, water during class, the restroom as needed, modified outdoor and PE activity in extreme temperatures, and even distance learning when pain flares at home.

One more line from that same fact sheet that every parent should know: a school may always accept that a student has a disability without any documentation or medical tests.

A 504 plan puts all of this in writing, so the substitute, the coach and next year's teacher all start from the same page. Nobody should have to re-explain sickle cell every August.

Parents, what's the one accommodation that changed your kid's school year?

Need help getting a 504 plan started? Message us or visit sicklecellmidwest.org.

10/02/2026

Your red blood cells live about four months. A sickled one? Two weeks, tops. 🩸

That one fact explains more about sickle cell than almost anything else. Red blood cells carry oxygen to every part of you. Normal ones live about 90 to 120 days. Sickled cells break down in 10 to 20 days, and the body can't make new ones fast enough to keep up. The result is a constant shortage of red blood cells, which is the anemia part of sickle cell anemia.

So when a warrior says they're tired, they don't mean sleepy. They mean their body is running on less oxygen than yours, all day, every day, and no amount of rest fully fixes that. Cancelled plans, early nights, a slow morning after a big day out. That's biology, not flakiness.

If you're the one who cancels, you're not letting anyone down. And if you're the friend who keeps showing up anyway, you're a bigger part of someone's health than you know. September's over. We're still here, and October's going to be a good month around here.

Warriors, what's the one thing a friend does that actually helps on a tired day?

Share this with the friend who always shows up.