Featured Blog Posts (27)

Happy sickle cell awareness month! How are you celebrating?

I’m excited to collaborate with Allstripes as an ambassador, especially in honor of sickle cell awareness month! They provide a comprehensive view of patient health records and research for rare diseases. Check out the…
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Added by Ade Dotun on September 11, 2021 at 9:00pm — 1 Comment

The Sickle Cell Podcast Feat. Ade

Checkout sickle cell 101 latest podcast episode with me :)

https://anchor.fm/thesicklecellpodcast/episodes/Why-Sickle-Cell--Feat--Ade-Adeyokunnu-e52cs5

Added by Ade Dotun on August 26, 2019 at 9:38pm — No Comments

Pictures

Okay everyone...seriously, I'm tired of looking at those green bobble heads! Please put pictures up...give the site some more personality. I love being able to put faces to names. If you shirk at putting a pic up of yourself, put one of your favorite pictures, or something that represents you. Say NO to green bobble-heads!

Added by Sickle Cell Warrior on August 27, 2009 at 4:09am — 1 Comment

INCESSANT PAIN

Hi warriors, I had one of the worst crisis Nov last year and was hospitalised for about a month, ever since I've been experiencing constant pain in most of my joints. I take Pentazocine injection almost every other day just to be able to go to work. I have tried different home therapies but no diff, feeling depressed now and at a low point, any advice on other drugs or therapy I could try? Scared of dependence on Pent. I am getting married later this year but really scared.

P.S I live in… Continue

Added by Sustain on April 18, 2016 at 4:45pm — 3 Comments

All Sickle cell trials in the US

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

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Added by Ade Dotun on February 11, 2015 at 10:06pm — 1 Comment

Tools to Increase Public Awareness and Knowledge of Sickle Cell Disease Undergraduate Challenge

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 …

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Added by Ade Dotun on November 4, 2015 at 10:17am — No Comments

Life gets better...

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…

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Added by Soo...kewl! on October 7, 2014 at 12:33am — 9 Comments

Seems like my health is getting worse with age, anyone else?

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?

Added by Shelly Kinsey on February 1, 2014 at 1:59pm — 4 Comments

Then Came the reality check....

Hi Everyone,

So sorry beeing away for so long. In fact it has been quite a while since I came here. Shamefull....

Yes, the reality of dealing with sickle cell just came to me as hard as it could. My son, who was crisis free until the age of 4, had a acute stroke 3 weeks after his 4th birthday. It was devastating and to make things even more painful, 6 months later he had the second one. We are worrking to have him a bone marrow transplant as quickly as we possivble can now,…

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Added by Nina on July 9, 2013 at 6:20pm — 2 Comments

At my best so far.

I would like to thank you all for your help, advice and being there when I needed people. After being here for a while I realized that there is no need to hide who I am, now most of my friends know about my condition and it really helps to have someone who understands. So far, I have seen improovements in me physically, psychologically and emotionally. Its been good that I could fast 30 days during the month of Ramadan without falling sick or having pain. I just feel good and I hope you all are… Continue

Added by Fahid Rabiu on September 6, 2012 at 2:13pm — 1 Comment

Magnetic Therapy

Magnetig Therapy (the application of static magnets to the source of pain) is supposed to increase blood circulation thus reducing pain...Do they work?

 

Added by anna chandler on June 1, 2012 at 3:37pm — 1 Comment

One Voice for Sickle Cell Speaks

On Sunday March 18, 2012, 10am -12pm (pacific time), I will be on Sunday Morning Live radio show discussing my book I Only Cry At Night and…
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Added by P.Allen Jones on March 17, 2012 at 12:44am — 2 Comments

A question for the younger men and women with SCD

Hello everyone..I am a parent of a 17 year old son with SCD type SS. He has had a fairly healthy life thus far. He has had his gall bladder removed, pnuemonia twice and two pain crisis in his life. First, I want to thank god for his health thus far and moving foward. I had a question for the younger men and women who suffer from this disease. My son has applied to several different colleges to include a college in GA. I currently live in NC and his father is currently in the military in…

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Added by Elisa Tyson on January 22, 2012 at 9:51pm — 3 Comments

why ignore our cries

why ignore the cries of that poor child, who is not privileged to have parent who can take good care of him or her. why does the government or celebrities spend so much on material things and forget that there is someone who needs love and material attention. most kids do not have rich and okay parent like we do that can buy their drugs and take them for regular check up with the doctor. most of them do not have good water to drink talk less of drinking good water like the doctors advice we do,… Continue

Added by chioma peters on October 14, 2011 at 9:29am — No Comments

Faces of Sickle Cell Photo Exhibit

Are you interested in lending your face to a photo exhibit of people living with sickle cell?  Check out my blog http://sicklecell-ourvoice.blogspot.com/ and see how you can be included

 

Faces of Sickle Cell.

Martin Luther King said, "We begin to die the moment we become silent about things that matter."  THIS MATTERS

 

Check it…

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Added by P.Allen Jones on October 7, 2011 at 2:53pm — No Comments

Leg Ulcer Clinical Trial

Hey everyone,

 

I got an email from Urevbu Foundation about a clinical trial being held by the University of Memphis. It is a nutrition study related to hypertention and leg ulcers.  If you live in the Memphis, TN area you may be interested.

See info below:

 

 SICKLE CELL NUTRITION STUDY                                                         

Low nitric oxide in people…

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Added by P.Allen Jones on September 19, 2011 at 3:05pm — No Comments

College Life + Sickle Cell = ???

Hey guys

 

I hope all is well with you.

I write a blog and am asking some people who graduated from college and people who are currently in college advice on college life. So I figured I would ask you guys since you're like another type of family/ community.

 

Ive been hospital free for 2 years ^_^ but I had a mini crisis this week. I almost forgot how bad it was to be in pain. Its soo annoying just having to put your life on hold. And it got me down a…

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Added by Bukky Ade on July 28, 2011 at 11:20pm — 5 Comments

7days through hell!

Hmmm...I'm lying on ma bed right now thinking of the pain of the last 7days.started on saturday lastweek,saturday is usually my 'lazing around' day. I had breakfast, my uncle came to visit us (me n my siblings),we were all gisting and then I got that feeling in my back...crisis knocking! And just like that,d pain came for real.I am 27years old and I have had quite a number of episodes but this was something else!

The pain is painfully indescribable,my doctors n nurses were moved to… Continue

Added by Soo...kewl! on July 3, 2011 at 2:05pm — 7 Comments

Sleepless in Atlanta

Hello SC Family,

Is there anyone out there who has trouble sleeping at night?  It does not matter what I take my body seems to get use to the medicine and I am up.  Any help or advice will be appreciated.

 

Thanks,

 

Added by SONJA HANLEY on May 7, 2011 at 1:09am — 4 Comments

Has Anyone Been Approved For Disability/SSI/Medicaid?

i was curious to see if anyone was able to receive anything government wise in regards to our condition.

 

i was actually approved for SSI which took 4 years, but...... (eye roll here), once at the office to get things in order i was told that i am not disabled, that i am able to actually work, therefore my case was closed.

 

its frustrating because they do not take into fact that sometimes i am out of work for days, even weeks. so where is my income at that…

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Added by Myra Davis on March 14, 2011 at 9:23pm — 7 Comments

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