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...

August SC News Roundup

Science & Research News:

GMI-1070 is Almost Here: I’m going to start today’s broadcast with some good news. GlycoMimetics, a pharmaceutical company in Gaithersburg is one step close to having on the market a drug that can help you mitigate a sickle cell crisis. As you know, there is no medication that one can take when in crisis that reverses the crisis, we just take pain meds to knock down the pain. However, GlycoMimetics’ drug GMI-1070 promises to change how sickle cell patients deal with the chronic pain brought by a Sickle Cell crisis.

By inhibiting selectin interactions, GMI-1070 may be able to decrease the enhanced cell adhesion that results in vaso-occlusive crisis.  In preclinical studies GMI-1070 restored blood flow to affected vessels of sickle cell animals experiencing vaso-occlusive crisis.  The drug is currently in Phase II after successful trials during Phase I.   People like athletes who have the disease can use the drug to stop the crisis from happening.

Sounds promising huh? Well, let’s keep our fingers crossed that Phase II goes well, and the drug is as good as it claims. I haven’t heard anything about side effects yet, but they usually don’t release that until Phase III. Read more HERE.

National News:

New SC Centers in TN: Great news for the 1500 warriors with sickle cell in Tennessee!  The Plough Foundation has given the Methodist Healthcare Foundation a $1 million challenge grant to endow a chair of hematology at a new sickle cell center being established at Methodist University Hospital. Methodist announced plans to build the Comprehensive Sickle Cell Center of Memphis in April last year. Its inpatient unit now operates on the Methodist University campus and construction of the new outpatient clinic is expected to be operating by the end of the year. Read more HERE.

Also in Tennessee, Vanderbilt is building their own Sickle Cell Center, based on a grant received from the federal government. Called the  Matthew Walker Center for Sickle Cell Disease Excellence. I don’t know what the Sickle Cell Organization is doing in Tennesse, but it must be pivotal to draw enough awareness to get 2 hospitals to support sickle cell disease management. Now if only we could get them in every state…that would be pretty awesome.

Quality Health Indicators for SC Pediatrics Developed: The good folks at the Boston University School of Medicine have finally established the quality indicators for children with sickle cell. The investigators recommended a total of 41 indicators covering 18 topics; 17 indicators described routine health care maintenance, 15 described acute or subacute care, and nine describe chronic care. Eight specific indicators covering six topics were most likely to have a large positive effect on improving quality of life and/or health outcomes for children with SCD: timely assessment and treatment of pain and fever, comprehensive planning, penicillin prophylaxis, transfusion, and the transition to adult care.


World News:

Middle East: In Bahrain, the first Sickle Cell Center is being constructed and is on task for completion by July, 2012. The center will be annexed to the Salmaniya Medical Center, and will provide targeted services for sickle cell patients. This is great news for SC patients in Bahrain, and hopefully the new center will insure that less patients die in the ER while waiting for treatment (in previous news, it was reported that over 20 sickle cell patients have died at SMC in the last year, and investigations have yet to be concluded into the gross negligence that led to each of these deaths. Read more about the new medical center HERE. In other Bahrain news, the Sickle Cell Anemia Patient Care chairman Mr. Zakreya Alkadem, is taking the Salmaniya Medical Center to task again, ADVOCATING that their sickle cell patients should not be classified as hardcore drug addicts. I must say, I’m impressed with the chairman. He is always quick to voice support and fight for the sickle cell patients over there, and because of his efforts, so much has changed and will change. I adore how he has the warriors’ back at all times. Rock on Z!

India: Although the government has stepped up their involvement with sickle cell education, treatment and screening, there is still a huge financial burden placed on patients. If you have sickle cell in Nagpur, India, you will get free blood transfusions and medications. But you have to pay for all medical tests like Xrays and CT scans out of pocket. Considering there is no insurance system there…this can put a family into the red fairly quickly. Hopefully things will change soon.

Also in Bhubaneswar, India: The Regional Medical Research Centre (RMRC) in Bhubaneswar will develop a strategy for management of the sickle cell disease in western Orissa. There are talks to build a sickle cell center in Khalahandi as well.

Newborn Screening Training Seminars: In Ghana, health personnel are being trained on newborn screening for sickle cell disease and trait. The newborn screening, which has been piloted in the Ashanti Region, is expected to be rolled out throughout Ghana in all the regional capitals and districts. The President of the Sickle Cell Foundation, Professor Kwaku Ohene-Frimpong, said: ‘14,000 infants are born with sickle cell disease annually. This is more than the children with HIV.’  The 2-day seminar will continue through all of Ghana, in the hopes that there will be automatic testing for Sickle cell in the future.


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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