It’s Sujata here...long time since been on here... was wondering do you know about the lates research currently at NIH for a pill medication for adults with SCA already in phase 2 one last phase and it’s ready for FDA approval that any hematologist can prescribe and the patient can pick it up! It might be doctor has to apply to a specialty Pharmacy. however for those adult like me living with SCA and no chance at stem cell transplant due to no blood relatives (since I’m adopted) also I’m not a candidate for a liver transplant even though my liver is at 1/2 function from Cirrosis (as you know iron-overload)!
This new pill will be able to change the morphology of all the sickle cells! It’s like cancer but only positive it targets the red cells in the bone marrow level that are predestined to be sickle and changes them before sent out in circulation to be come more oval like shape and size! Then the pill helps to make an over population so as to overwhelm any stragglers of sickle cells whom don’t change but the percentage is very low thacould be wrobu
Therefore these new (non sickle cells) will have not pointed parts to what I like to call ‘traffic jams’ especially around the joints, but as you know a crisis can happ anywhere at anytime even when we think we having a great day! The oval shape allows it to carry more O2 through out the system he and resolving other flowing issues such as preventing clots .
Amazing right a true miracle at least for me! And I thank God I’m was born in this generation with science and technology.
Saw your post about getting into UT grad school. Congrats! Austin has a pretty good network since the Sickle Cell Assoc of Texas Marc Thomas foundation is based there. They are a good group that I've helped out with before. I live in Houston but I'm in Austin regularly since I have family there. Best of luck with the move and if you need anything let me know.
Thank you for the Welcome and this site has been long needed! Congrats to you for finding the need and taking initiative (the follow through: to fill the need) by connecting so many of us together through the use of IT. Information Technology gets such a bad reputation as being unhealthy for our bodies, yet we all need support, both healthy and unhealthy, but it's sometimes harder for those of us keep living with our invisible (many times inconvenient and sometimes crumbling) pain episodes to keep in touch one on one with family or close friends. Unfortunately, sometimes even those whom love us are worn out too by being our caregivers and are almost afraid to admit they need a break too! Thanks for allowing (also a brilliant idea I might add) to have those whom want to learn and educate themselves from our point of view! Although, it may only be aquated to a single star in our own Galaxy of daily living with this illness at least it's a light in the darkness and can acknowledge for ourselves we are not alone...if we just speak up or just listen to others...nor were we ever!
Hi Ade - I just posted some questions for discussion. I love the design of your website - it was well thought through!
I was wondering - did you attend last year's NIH, 2-day meeting around SC & engaging the community, or view the webcast? If not, here are links; these were excellent in my opinion, much better than the FDA community engagement meeting (held in 2014 I believe).
I have two questions around the NIH webcast:
- Would you be willing to publish the links on your website?
- Why do you think turnout was so low? I recall that last time I looked, for one day there were only about 350 people that had tuned into the webcast (I assume this was at the time of the event and does not count 'replays').