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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments7 comments
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...Reactions0reactionsComments8 repliesAwarenessAssistive 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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments3 comments
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...Reactions0reactionsComments3 comments
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?...Reactions0reactionsComments1 repliesTips & 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...Reactions0reactionsComments4 comments
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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments2 comments
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...Reactions0reactionsComments5 comments
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...Reactions0reactionsComments0 comments
Stewed Yams and Chicken...People living with sickle cell disease need to know just how important it is to choose foods that support their health needs. No supplement or superfood can cure sickle cell...Reactions0reactionsComments4 comments
Sickle Cell and Me...Hi, my name is Sakina. New here. I have always wanted to speak to people who understood my pains. I was diagnosed with sickle cell when I was 10. It...Reactions0reactionsComments4 comments
Anything Can Happen...Today was almost a bad day. Maybe it was self-induced anxiety about starting surgery, what is known as the hardest rotation of medical school – for good reason. The hours...Reactions0reactionsComments2 comments
The Pain I Have to Deal With...Content Note: This article alludes to suicide. If you or a loved one are struggling, consider reading our mental health resources page. I am tired of being a warrior. At...Reactions0reactionsComments2 comments
Patient concierge ...I’m in the process of developing a non profit concierge service for sickle cell patients who get hospitalized. I’m looking for ideas on what services can be provided that would...Reactions0reactionsComments5 repliesAwarenessCaregivingDiet & Nutrition
Finding a Seat at the Advocacy Table...With the nominations for the #SocialHealthAwards well underway, I started thinking about my own journey to advocacy. It's been far from the norm. My perspective on activism and advocacy is...Reactions0reactionsComments0 comments
Discussion - Sickle-Cell/Thalassemia....Does any one wish to discuss any issues to do with any one or all of these conditions?...Reactions0reactionsComments2 repliesAwarenessCopingFriends & Family