Hello Everyone! I am Jessica, a Simmons School of Nursing student. My colleagues and I are conducting some research this semester and need your help.We have developed a ten-item questionnaire via survey monkey. Responses to this survey will help healthcare professionals better understand the needs of patients with sickle cell. Our project goal is to gain the perspectives of those diagnosed with sickle cell anemia on how they feel their pain is adequately treated, and what we as health care…

Dear Members,

The students of the Sobey School of Business , Halifax , Canada are doing some research into the issues which affect those afflicted by Sickle Cell Disease (SCD), with particular relation to crisis situations. We are currently developing an innovation geared toward increasing the quality of life of those living with SCD and their affected families by using predictive technology. 



It is for this reason that we seek potential customer…

for

Hey Everyone, 

We are doing a Paid Market Research in the UK we would like to get as many patients as possible, to take part in our one hour telephone discussion, I know one hour seems a long time but you can let me know if this is too long as i understand you may have some discomfort being on the phone for this amount of time so we could potentially split this up in to different parts, we would like to create a (PRO) this is a Patient Recorded Outcomes the reason…

Hey all,

Hope you are all well and enjoyed your weekend. I just wanted to pass along some wonderful information shared by a fellow warrior. The National Heart, Lung, and Blood Institute is having a "Novel, Innovative Tools to Increase Public Awareness and Knowledge of Sickle Cell Disease Undergraduate Challenge” and would like to encourage those who are eligible to please …

Clinical Trial of Vaporized CANNABIS for

Chronic Pain Caused By Sickle Cell Disease

This UCSF study at San Francisco General Hospital (SFGH) will evaluate whether using vaporized cannabis reduces pain in people who are taking opioid medications for chronic pain associated with sickle cell disease.

TO JOIN THIS STUDY YOU MUST:

• Have a diagnosis of sickle cell…

New site I found where you can look for trials in your country:…

Hey everyone,

It's been ages since i was here(last post was in 2011)...I stopped using my yahoo id for a while and i guess life happened...but I'm happy to be back...A lot has happened since my last post,lol...Got married, pregnant then had the most beautiful baby girl ever...

On pregnancy, I prayed against morning sickness, because that would cause dehydration and dehydration will lead to a crisis (we know the drill,lol)...and guess what? for 37 weeks, i had no…

The Sickle Cell  Community Service Awards celebrates health leaders, advocates, and role models in the sickle cell community. Recognize the leaders that are making a difference in sickle cell disease by nominating them for a Sickle Cell Community Service Award.

Nominate someone HERE, then share the news to gain…

I am 30 years old now and it seems like I'm in the hospital every other month. In my teens and twenties I was great, virtually now problems and no hospital visits! Now, I'm a mother of 2 and sickle cell is getting in the way of my family time :( Anyone else notice that with age, health gets worse?

I've been a member of this site for over a year now. I really enjoy reading through people's posts and giving my input where I see fit, but after all of this time, I am realizing that I have never really taken the time to introduce myself and establish connections. So, here goes... my name is Lakiesha but everyone calls me Kiesha. I am 25yrs old, a student, and filmmaker. I have been working hard to do my part in spreading the word about Sickle Cell Disease and raising awareness in the…

Have any of you ever had pain in many spots before that made it hard to get out of bed or even just get around your home? I have AVN, RA, and SCD (SS) and yesterday it took me 4 hours to get out of bed and when I finally did I just wanted to get back in bed. I tried going out with my brother and his new wife with my bf on our usual date night, but by the end of the night I couldn't even stand up. It took me 30 min to walk to the car that was parked 2 blocks away and then I had to be carried…

I have two children girl and boy! My daughter has the sickle cell trait but my son has the actual disease.(S.S) I have done testing to see if my daughter could possibly be a matching bone marrow donor for my son but she was not. My son is 7 months and he is doing great so far but I have coped with the fact that one day he will go through a pain crisis and has to live with this disease for the rest of his life. Does anyone know how others can sign up to be a bone marrow donor? What are the…