Sikcell: People living with Sickle Cell

We still Hope

October 2009 Blog Posts (19)

Kudos!

WOW 202 members?
I remember whne it was only me and Ade on the site. Thanks to everyone who invited friends and spread the word.

I would Love to meet some of you all if you Live in the DMV.

Added by Bukky Ade on October 31, 2009 at 8:13pm — 3 Comments

My Uncle works with medicines, and helps research treatments and cures....he found this for me...

There are two Trials that they are testing on Sickle Cell patients, look them up on Google for more information about these trials, also you can directly contact the investigators by using the phone number or websit provided.

Trial 1:A Phase II Pharmacodynamic Investigation of the Efficacy of Vorinostat to Induce Fetal Hemoglobin in Adults With Severe Sickle Cell Disease Who Have Failed Prior Therapy

Dana-Farber Cancer Institute

Brigham and Women's… Continue

Added by Adriana Jade on October 31, 2009 at 3:56pm — No Comments

Join Me on Facebook

Type Sickle Cell Warrior in your search box.

Sickle Cell Warrior on Facebook

Added by Sickle Cell Warrior on October 29, 2009 at 10:02am — No Comments

Thanks

Thanks for the blog I have a 5 year old and 1 year old cousin who have Sickle Cell really badly.

Added by Taylor Williams on October 22, 2009 at 11:34am — No Comments

thanks

thanks Quilla my girl is a real fighter and i appreciate he prayers.

Added by lilian mbori on October 17, 2009 at 3:37pm — No Comments

am impressed

thanks for this blog , i have a 3yr old daughter with SCD as i wrIte this mail we are in hospital she is having pneumonia and high fever . as a nurse and having the trait ,i have been on the lookout for this blog and i thank GOD FOR YOU GUYS. i have always worried about my girls happiness but from pictures posted here i can see hope and i cant express what i feel. she had stroke and developed left sided weakness that is when i decided to fight SCD . BRAVO!!! by the way thats her on the profile… Continue

Added by lilian mbori on October 17, 2009 at 2:00pm — 4 Comments

FLU SHOT

GOT MY FLU SHOT TODAY!!! NOW I AM HAVING A CRISIS REALLY DON'T WANT TO SPEND THE NIGHT AT GRADY ACUTE CARE CENTER TONIGHT !!!!!!!!!!! PRAYING THE PAIN WOULD GO AWAY!!!!

Added by Thewana Bradley on October 16, 2009 at 9:40pm — 4 Comments

NOW CASTING SICKLERS FOR DOCUMENTARY

New and Engaging Documentary currently in Production seeks more cast members!

Does someone you know or even yourself have Sickle Cell Disease? We are still seeking individuals and families willing to participate in this wonderful awareness campaign! Tell your story! Let the world know the life of a Sickle Cell patient.

If you or someone you know have a thought provoking story and are willing to share it you are encouraged to respond!

We are looking for fun… Continue

Added by Keda B. Reel on October 16, 2009 at 3:48pm — 1 Comment

Question about pains

I understand us with SCD can experience pain in the joints and maybe other places such as neck or back.

For the past year or two I noticed that as the weather gets cold, I'm having odd pains in my facial bones. Especially in the areas around the cheeks and the lower jaw. Does anyone else experience this??????

Added by Tracy H. on October 15, 2009 at 11:30pm — 3 Comments

Memory Wall Now Active For Project Hemoglobin S

Join the fan page on facebook for Project Hemoglobin: S

A movement inspired by advocates for Sickle Cell Disease Awareness.

Sickle Cell Disease is an inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin* S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels.

Project Hemoglobin S empoweres,… Continue

Added by Keda B. Reel on October 15, 2009 at 1:00pm — No Comments

Video Blog Submissions Now Being Accepted For Documentary On Sickle Cell Disease

Project Hemoglobin S, The new Sickle Cell Disease movement is now accepting video blogs from patients.

If you are currently or have in the past had a crises you could be featured in our documentary film on Sickle Cell Disease.

If you are interested and would like to share your story with millions please reply to the address listed below for further details.

docprjtquery@demarfilms.net

Attention Kesha Bell-Producer

We look forward to… Continue

Added by Keda B. Reel on October 15, 2009 at 1:00pm — No Comments

Something 2 Think About

The French writer Montaigne said, "The most uncouth of our afflictions is to despise our being." Sometimes we let it slip by us to not allow our high standards to defeat us! For what spurs you to great heights can also paralyze you if you're not careful. How many of us have allowed ourselves to fall into this trap? I know that I have...plenty of times.

Added by LaRhonda Hart on October 12, 2009 at 12:59pm — No Comments

I HOPE EVERYONE IS DOING WELL

I JUST WANTED TO SAY I HOPE EVERYONE IS DOING WELL WITH THERE HEALTH AND HAVE A GOOD WEEKEND WITH FAMILY AND FRIENDS.

Added by etta on October 9, 2009 at 12:50pm — 1 Comment

Researchers Find Key To Keeping Cells In Shape

ScienceDaily (Aug. 17, 2009) — Yale University researchers have discovered how a protein within most cell membranes helps maintain normal cell size, a breakthrough in basic biology that has implications for a variety of diseases such as sickle cell anemia and disorders of the nervous system.

Check it out here!!!! http://www.sciencedaily.com/releases/2009/08/090806121752.htm#

Added by Mr.JAH on October 8, 2009 at 2:51pm — 2 Comments

Sitting Here

I am sitting here feeling defeated. I have just come home from the hospital on Sunday and I am still in pain. I hate to go back but I feel there is no option. I have taken the pain meds they gave me to no avail. My dilemma I have a three year old who I have sitting in front of the tv because mommy cant play with him. I feel like I am becoming depressed and I see how this disease can affect you mentally. I really hate going back to the er because they will look at me funny and say oh your back… Continue

Added by Tiffany J. White on October 6, 2009 at 11:01am — 2 Comments

Vicodin

I was feeling really bad last nite and decided to take a vicodin. I have taken Vicodin before it is usually very effective but last nite I had severe stomach pain and was severely nauseous. The Vicodin also made me dizzy. Has anyone experienced this from Vicodin before even if you have taken it before and it worked? I am now also afraid to take Vicodin again, any suggestion on pain aid? I have taken Tylenol #3 and percocet neither was as effective as Vicodin.

Added by Trish on October 5, 2009 at 8:20pm — 4 Comments

Flu Shots and Sickle Cell

Can anybody tell me if they have had any bad side effects because of the flu shots and u having sickle cell.My baby just recieved hers for the first time and she still seems to be achy without a fever.What signs should I also be concerned about because I dont want to take her to the hospitalif I dont have to because she might get worst!

Added by NICHOLE on October 5, 2009 at 7:24pm — 4 Comments

Depression and sickle cell

Hello im amoree and I do not know if it is just me or not but I have been through depression alot in my life and I dont know if it was because of my sickle cell and if any one else had the same feelings that I had it started when I was 12 and they started giveing me meds for my depression and it seem to help and now im 17 and it seem that all the feelings are comeing I just dont seem to be me anymore and lately I have been in alot of pain and I have been in the hospital and its like when im in… Continue

Added by amoree on October 2, 2009 at 10:32am — 4 Comments

Sickle Cell Clinical Trials

I would like to know if any SCD member of this site has ever participated in a SCD clinical trial. If so, what was the trial; what phase was the trial in, and what was your experience. Also, if you have never participated or inquired about a clinical trial, the please share your reason(s) why?

I ask this question because I have a baby girl due in Nov. and my husband and I found out during my 5th month that she will have SCD. I’ll have to post a blog about that whole ordeal some other… Continue

Added by Ava Grace on October 1, 2009 at 10:21am — No Comments