Sickle Cell Warriors

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 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...

June 2012 SC News Update

National News

There was a plethora of events in honor of World Sickle Cell Day held on June 19th from blood/marrow drives, to fundraisers, walks, and races. I feel this year there was far more attention paid to sickle cell, and that is mostly due to everyone telling their friends, families, and local organizations about World Sickle Cell Day! It’s finally getting some traction in the SC community. So Go You!

International News

In Bahrain, 3 more patients died within 24 hours at Salmaniya Medical Center. This leads to a total of 5 deaths within that week. The national Sickle Cell Organization is all over this, and has called for a probe into the operations of the hospital in regards to sickle cell patients. The deaths have forced sickle cell activists to call on the Health Ministry for an “urgent and complete investigation”. A conference has been organized to educate health professionals and establish protocols for treatment of sickle cell patients. The deaths are tragic, but I am quite heartened by how ACTIVE this NATIONAL sickle cell organization is. I wish every sickle cell death was treated with such gravity in other countries like the USA. Kudos!

Canada, Nigeria, Ghana, Zambia, and Uganda are ramping out additional sickle cell screening and educational programs for the general public, in at attempt to decrease the high rates of those with sickle cell disease and high birth rates of sickle cell infants. In Nigeria, there are four dedicated sickle cell centers in Abakaliki, Ebute Meta, Gombe and Keffi.

In other Nigerian news (and this almost made me super excited!), NICOSAN may be back in full production very soon. I know we hear this rumor every few months but it seems like there is actually traction with the powers-that-be in that respect. THREE institutions in the health and finance sectors, in Abuja, have recently signed a Memorandum of Understanding (MoU) for the production of the sickle cell drugs in Nigeria. They are the National Institute for Pharmaceutical Research and Development (NIPRD), Nigeria Export Import Bank (NEXIM Bank) and the Federal Ministry of Health. As you remember from my long Nicosan articles, they were the ones that held up the production process. Hopefully now since they are all in agreement, production will continue. Read the article here.

In Antigua, the Antigua & Barbuda Sickle Cell Association (ABSCA) officially opened its office at Holberton Hospital last month. Get deets on the opening here.

Research News

Phase II of the L-Glutamine trials are now complete. The 57-week, randomized, double-blind clinical study was completed by 30 patients at five sites. The Phase II trials demonstrated a major trend toward a reduced frequency of painful sickle cell crises for the treatment group. In addition, the frequency of hospitalizations decreased significantly. 1 step closer…Read more HERE.

Aventrx joins the research party with a new polymer for sickle cell disease and other cardiovascular conditions called ANX-188. It’s very technical, but read on HERE.

In France, Erytech Pharma’s sickle cell drug receives positive opinion from the European Drug Agency as an orphan drug. This is one step closer to getting ENHOXY on the market. ENHOXY®, human erythrocytes encapsulating inositol hexaphosphate, enhances the oxygenation properties of red blood cells by reducing their oxygen-hemoglobin affinity and allowing them to release more oxygen. Read more about it HERE.

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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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1 Comment

  1. Kintoya Putman
    Kintoya Putman July 24, 18:06

    Hi, I was just wondering if the oldest person living with sickle cell disease is still Ms. Diamond?

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