Sikcell: People living with Sickle Cell

We still Hope

All Blog Posts (292)

H1N1

Hey All. This website has been a blessing to me.... I just joined about a month ago. I just wanted to know how other people was living with this disease. I have been having my personal battle w/scd, and not really letting people in, because I didn't want anyone to feel sorry for me.... I wanted to know did any get the H1N1 shot?

Added by Chantell-the Overcomer on November 20, 2009 at 12:32am — 4 Comments

Premedicate?

Do anyone pre-medicate? I was told by my Dr. to premedicate myself. It seems a little scary, sometimes I feel like a druggie because I'm taking medicine when I'm not in pain. But it helps especially when I'm going to be out of the house for a long period of time during errands and whatnots or when I exercise. Most of the times I push myself to hard and end up having small crisis at the end of the day. I don't take anything that would make me sleepy, just something over the counter like Tylenol.… Continue

Added by Trish on November 20, 2009 at 12:07am — 5 Comments

Hey SC Soliders!

Hello Everyone, I haven't been on here in awhile and I just wanted to say hello to everyone and hope you guys are feeling good. I'm still struggling as I know all of you guys are too. But we got to hold on and not give up, I tell that to myself all the time especially when I'm feeling my worse. I know I've said this before but I'm so happy I have found people like myself who can relate to me and not feel sorry for me. Thanks again for your continued support.

Added by Trish on November 16, 2009 at 3:22pm — 3 Comments

Stem Cell Research

Today me and my family entered a study conducted at NIH on stem cell research.We have a 20 month old baby with Sickle Cell SS and we currently are expecting a baby in February that we dont know the status on as of yet!Since this is a network dedicated to people with Sickle Cell I would like any input on what u think about Stem Cell Research and the ways that it can cure this disease.I would also like to know if anyone has ever met anyone that has considered having it done or has had this done… Continue

Added by NICHOLE on November 12, 2009 at 11:04pm — 3 Comments

~41 & Sailing right along~

Listen my Sickle Cell Family!!! Protect your body as much as you can. If you have to take pain meds plz flush your body with alittle lemon water or apple vinegar water...Eat as natural as possible!! No fast foods or limit your fast food intake. NO SALT!! Plz use Mrs.Dash & Cayanne Pepper as often as u eat. Shop at stores where the produce is organic or less chemicals as possible. The older we get our organs began to feel the effects of having sickle cell. Those darn sickled cells will… Continue

Added by LaNora on November 10, 2009 at 1:30pm — 2 Comments

Live life to the fullest...or lost?

For so long I have keep me having sc to myself but my doc. told to get online to better educate myself and thats when I found this network for people like myself. I never did the support group thing and told my fam to treat me no different than my siblings but as I got older I found myself having questions and just by reading alot of ur blogs it has truely help. I'm 26 living with sickle cell and I have two children with the trait. And I am thankful that Im at home after two day at the… Continue

Added by Tahara Boston on November 6, 2009 at 12:59am — 1 Comment

STILL RECOVERING

JUST WANT TO SAY THANK YOU TO MY SC FAMILY FOR YOUR PRAYERS AND FOR JUST THINKING ABOUT ME!!!!!!!!!!!!!!! LOVE YOU GUYS!!!!!!!!!!!

Added by Thewana Bradley on November 5, 2009 at 10:08pm — 3 Comments

How to I allow my child to grow as an adult

As I stated before in previuos post I have a daughter who is turning 16. I have treated her like a baby all her life. I guess out of guilt I let her do less than my other kids. I give her just about anything she wants. I know it not right but I thought at the time I was doing what was best for her. I am now starting to realize that she is too depenedent on me. Everytime there is a problem she calls me for help, I dont mind, but she cant handle anything on her own.

For instance me or… Continue

Added by Sharolyn Hutchinson on November 4, 2009 at 7:47pm — 4 Comments

Transutuin from Pediatric to Adult with SCD

My daughter is 15 going on 16, I know she has a couple of years before she will have to go to the adult clinic. I was just wondering if anyone had any suggestions on how to make the transition smooth. I know when you are a child they give you medicine with no question. As a adult I am told that they give you a hard time about pain medicine.

Added by Sharolyn Hutchinson on November 3, 2009 at 5:29pm — 4 Comments

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