Mourn With a Purpose: Channeling Sickle Cell Grief Into Advocacy...The loss of quality of life is a term that has been used in the context of a grieving person. The loss of quality of life for a grieving person...reactions3comments
Paying Attention To Body Language...When you hear the phrase "body language," you immediately think of non-verbal cues that we use to communicate: crossed arms, head movements, eye behavior, and facial expressions. That's not the...reactions3comments
Overcoming the Fear of the Future...It feels kind of surreal that I turned 25 this July. Somehow, I'm reminded that adulthood is coming and it is coming fast. I haven't really sat down to think...reactions5comments
How has a shorter life expectancy impacted you?...A fellow warrior wrote a great article this week about life expectancy. Has this part of your disease changed the way you live your life? Are you more daring? Do...reactions2repliesCoping
Living Beyond 50 with Sickle Cell...Hello fellow warriors and caregivers. My name is Trish and I live with having HB-SS. My sickle cell was discovered at the age of 10 at a children's hospital. I...reactions2comments
Halimat Talks Periods, Birth Control, and Sickle Cell...This past March, Halimat sat down to have a conversation with herself in honor of Women's History Month and International Women's Day. In this video, she reflects on how hard...reactionscomments
A Life Worth Living: How a Shorter Life Expectancy Affected Me...Editor’s note: As of September 2024, Oxbryta® (voxelotor) has been voluntarily withdrawn from the market by the manufacturer due to safety concerns. Pfizer, the manufacturer of Oxbryta, has also ceased...reactions3comments
Sickle Cell Disease Speaks All Languages...Thanks to the Health Union, I was able to attend and speak during the sickle cell event in my home country, Suriname, South America. The year 2022 has so far...reactionscomments
My Treatment Side Effects...All drugs have side effects. If you are lucky enough, you may never experience them. Unfortunately for me, my body seems to be affected by most of them. If you...reactions1comment
Channeling Confidence As An Advocate...Lately, I've found myself getting lost in curated content for the disabled community. I admire the confidence, creative voice, storytelling ability, and remarkable zest for life that these creators possess...reactions7comments
Reaching out to the hinterlands ...With my little stay here, I noticed most of the active members here base abroad. well that's great for you all. Living in a country with law and order, available...reactions8repliesAwarenessAssistive DevicesDepression
Tolu Tani-Olu's Story...My story begins when I was diagnosed with sickle cell when I was one years old. I lived with my family in Nigeria and we moved to the United States...reactions1comment
Keeping the Hope Alive...One of the hardest things to do is try to encourage yourself in your worse moments. It’s easy to smile and be yourself when you’re not sick or not experiencing...reactions3comments
Presenting on Sickle Cell at Conferences...Recently, I went to the American Society of Hematology’s (ASH) Annual Meeting. It was in Atlanta, and I was only given off 3 days from school, which meant I would...reactions3comments
Disclosing Your Diagnosis...There is a lot of stigma and misconceptions about sickle cell disease. Have you had trouble telling people you have sickle cell? How do you decide when to say something?...reactions1replyTips & AdviceFriends & Family
The Power of Telling Your Story...Recently, Nigerian singer and songwriter Adekunle Gold became a trending topic in the sickle cell community (especially in Nigeria) when he opened up about his struggle with sickle cell disease...reactions4comments
Learning to Cope With Survivor’s Guilt...Once upon a time, a warrior said to me "I'm sure after your transplant you'll turn your back on the sickle cell community." I was honestly speechless! What was so...reactions1comment
Unconsciously Irritated...Not long ago I got a call from a friend who I actually consider a sister. She walked around for months with an unpleasant feeling from a "meeting" I had...reactions2comments
FOMO (Feeling of Missing Out)...I have been feeling stuck and out of place a lot lately. There’s this saying about how your 20s are this whirlwind of self-discovery and trial and error. Wow, they...reactions5comments
Knowledge Is Power...Over the past few weeks, I have met so many new people within the sickle cell community. It is wonderful to see how many parents and warriors are committed to...reactionscomments
