Hello everyone!
Sickle Cell Warriors, we hear complaints that there is not enough being done for Sickle Cell Disease. Only a few people completed this survey which is disappointing. For instance, there are over 100,000 people with SCD in the US and millions abroad and very few people have filled it out. How can we expect others to help us if we don’t help ourselves?
Modus Therapeutics does things differently. Instead of creating a clinical trial and asking for patient input AFTER the fact, they reached out to us in the beginning. Let’s not waste the chance we always wanted. Please take a few minutes to answer this survey. I found it extremely insightful, and you can tell that they are focused on understanding our experience and perspectives on living with sickle cell disease.
They promised to share the results of the survey with us, and that your info will be protected. In fact, they do not collect any identifying information. So please give them a hand, so they can give us a hand. This might be the cure we have all been waiting for.
Visit www.modustxpatientsurvey.com and take a survey created by patients in partnership with Modus Therapeutics. In addition, your responses are anonymous and will shape an upcoming clinical trial with a new potential treatment for Sickle Cell Disease
Share the link with your friends and family affected by sickle cell. Finally, the more people respond, the more impact we will have in the long term.
Thank you!
In January 2016 untill May 2016,I was going to the hospital for crisis and blood transfusions. In sooo many words that was really all they could do for me. I was told l was being placed on procrit monthly. I refused it. I went to a Sickle cell conference in June 2016. I was taught how to take care of my self,and also started taking an herb,vitamin called EVEN FLO.It has changed my life forever. I have not gone to the hospital for a crisis nor blood transfusions. Before 2016,for over 10 years I has to get blood transfusions faithfully every 3 months. God is good.I give all the glory to him.He let me live to receive this.
Ty so much 4 this new info. I have had the same problem but I’ve been doing transfusions and/or crisis every 2 weeks 4 the past 15 yrs almost. Now it’s to the point that my pain n fatigue don’t lesson in between. I used to get at least a week-wk 1/2 b4 starting to feel sick again.
These docs at Hershey med have no new info for me. Ive been beggin for all these yrs 4 a reason why my crisis gave gone from every 3mth from age 19-30 to progressively closer till im at this point!
I will research this med n try it if I like what I c. Any other info is welcome.
I also have been considering admitting myself to Grady hospital in Atlanta bc they have a scd wing so I figure they must know more than this area. (hbg/hershey)