Sickle Cell Warriors


 Breaking News
  • VOICE Crisis Alert App VOICE Crisis Alert App The VOICE Crisis Alert app is the first national app created for patients and families with sickle cell disease. The app stores all its data locally...
  • World Sickle Cell Day 2018 Hello Warrior Family! Don’t forget, today, Tuesday June 19th is World Sickle Cell Day. This was specially designated by the World Health Organization in 2009 to improve the education, research, and...
  • SCD Adult Support Groups in Southern California California Warriors, great news! Cayenne Wellness is now hosting monthly support group meetings in Fresno, San Diego, Los Angles, Loma Linda, and Antelope Valley. You get to meet others with...
  • Tracing sickle cell back to one child, 7,300 years ago Tracing sickle cell back to one child, 7,300 years ago Check out this amazing article by Nalina Eggert of BBC News for a journey of SCD from 7,300 years ago.  The...
  • Meet Brittany: Caregiver, poet, and writer This week’s warrior in the spotlight is Brittany Hightower.  Brittany is a caregiver who is beautiful, intelligent, and passionate about poetry. And oh yeah, she has sickle cell. How old...

Autumn 2012 SC News Wrap Up

International News

Despite being equipped with high-end machinery required to conduct prenatal diagnosis of sickle cell disease, the Indira Gandhi Government Medical College and Hospital (IGMCH) has kept them unused. Also in India, the government is preparing to launch prenatal testing in its major districts. Read more about that HERE.

Bahrain sickle cell warriors are still dying regularly at Salmaniya Medical Center. Someone needs to set up better protocols for sickle cell patients…this is beyond tragic.

In Nigeria, the Federal Medical Center called for collaborated efforts in dealing with the challenge of Sickle Cell Disorder (SCD) in the country. If you do have sickle cell, STOP TAKING BLOOD TONIC preparations because it will lead to IRON OVERLOAD.

On the Research front, the Emmaus CEO issued a statement of the L-glutamine trials for sickle cell disease, which is now in phase 3. Read the statement HERE.

In Kashmir,  a scientist has applied for a patent in the World Intellectual Property Organization (WIPO) for the development of an effective herbal drug for treatment of sickle cell disease. Hard to get any other details, but hopefully we will hear something on this front in the next few years.

Research & National News

Yetunde Felix-Ukwu (a warrior on facebook) was one of the first people to undergo the half-match bone marrow transplant. Read more about the research study and her amazing results here, and contact Johns Hopkins for more information. This is a first step toward finding a cure for sickle cell for those that do not have active full HLA matches. It’s definitely hopeful.

Adventrx has moved to phase III on it’s sickle cell drug ANX-188. This med works during crisis to reduce clumping. Read more about it HERE.

Gamida Cell Ltd., a world leader in stem cell population expansion technologies and stem cell therapy products for transplantation and regenerative medicine, announced today that the first patient, enrolled in its pilot study of NiCord(R) as an investigational treatment for sickle cell disease (SCD), has been transplanted at Duke University in North Carolina. Another HUGE stride in research. I’m almost doing a happy dance over here.

A study recently published showed that children with sickle cell disease are vulnerable to cerebral infarcts from ‘silent strokes’ in childhood. This is the finalized publication from the research news that broke about it last year. Read more HERE.

Another published study by Drexel University broke down the etiology of what happens in the cell during a vaso-occlusive crisis. If you’re interested, the link is here. All I know is that it effing hurts!

Children and their families grappling with sickle cell disease are able to experience special programming offered by The Hole in the Wall Gang Camp, thanks to a $100,000 leadership grant from the Aetna Foundation, the philanthropic arm of Aetna. Those of you that live close to or in Conneticut, this camp might be your new summer hangout.

In the UK, Homerton Hospital has expanded it’s facilities to open a day unit for those with sickle cell disease. Read more HERE.


About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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