Sikcell: People living with Sickle Cell

We still Hope

Ade Dotun's Comments

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At 8:46am on June 29, 2021, Sean bond said…: What's good brother, I hope all is well with you, I'm doing great thank you.

I'm no longer in florida but now in Georgia and loving it.

At 7:44pm on February 5, 2020, Johanna Mack said…: Hello and thank you for accepting me. I wanted to learn a little more about your site. I have an organization and we do several events an I would be honor if I could share my events on your page.

At 5:37pm on February 5, 2020, Preston said…: I am doing very well! Blessed! Thank you very much! Hope you are doing well also!

At 3:04pm on January 17, 2020, David Chester said…: Thank you for your Birthday Wishes, I'm well as can be thank God. :)

At 5:17pm on August 16, 2019, Tamica Ennis said…: Thank you for the birthday wishes. I’m well

At 5:23pm on January 12, 2019, Feyi Goke said…: Thank you for accepting me into the forum.

At 2:52am on October 20, 2018, Fahid Rabiu said…: Thanks Bro. Had a wonderful day.

At 4:26pm on September 13, 2018, Angela Edebiri said…: Thanks Ade, had a lovely day.

At 11:56pm on January 31, 2018, Apollo Clefton Raymond said…: Thank you for letting me be here.

At 5:54pm on November 15, 2017, Sujata said…: Hey Ade,

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.

At 12:05am on July 26, 2017, Carlyle said…: 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.

At 2:12pm on April 24, 2017, bukky said…: Hey ade, can you send me an email please. I work with the Sickle Cell Aid Foundation in Nigeria and I would like us to work on some things together. It's bukky_bolarinwa@yahoo.com. Cheers

At 5:39am on March 29, 2017, Fola O said…: Thank you!!

At 11:04am on November 30, 2016, Adeleke Samson said…: Thanks so much Ade

At 4:16pm on September 23, 2016, Teela Mae said…: do you have sickle cell? if so when were you diagnose?

At 11:23pm on July 11, 2016, Marcus McKinley said…: Thank you brother

At 10:38pm on July 7, 2016, Adedoyin said…: Thank you.
I guess you created this platform. Great. God bless you.

At 11:46pm on May 11, 2016, Lashawn Hutchinson said…: THANK YOU FOR THIS SITE!! I AM JUST GETTING AROUND TO LOOKING AT IT ALL AND I AM SO VERY PROUD TO BE A PART OF YOUR FAMILY.

At 9:52am on April 15, 2016, Arkiesha Branch said…: Thank you.

At 1:07pm on March 23, 2016, Sujata said…: Dear Admim,

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!

In thoughts and prayers.
Always,
Sujata