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We want to make it easier to find credible, useful information that helps make it a little easier to live with sickle cell. Ideas for content are welcome!

Research into treatments for sickle cell are at an all-time high. Once a new possibility is discovered, it moves through a series of further studies and approvals that include clinical trials. Without the brave patients who come forward to test new approaches, new treatments couldn't make it to market.  Here's a list of NIH-funded trials for sickle cell currently underway.

Source: National Institutes of Health

A diagnosis of sickle cell comes with its own language. If you're newly-diagnosed, the words can be overwhelming. As research evolves and new discoveries about living with the disease come to light, new terms will be added to conversations. This glossary will serve as both an introduction and a refresher for those who need it.

Source: Missouri Dept. of Health & Senior Services

Do you know what your doctor just said to you? Even if you ask for clarification on site, you might forget a few things before you reach your next destination. Or you may be surfing the internet and come across unfamiliar terms used in your medical care. This dictionary provides definitions in every day language to help you better understand your condition.

Source: Medical Library Association 

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Click the image for a PDF of the NIH guidelines and recommendations for the health maintenance of people with sickle cell. (Approx. 40 pages) Read and provide a copy to your primary care physician. Click the yellow button to go directly to the full NIH document.

Source: National Institutes of Health

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In February 2019, the CDC clarified its opioid guidelines in a letter to ASH stating its guidelines were not intended to manage the complexities of sickle cell. The CDC instead refers providers to the NIH guidelines for proper care. Access the full letter.

Source: American Society of Hematology

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Click the image for a PDF of the full NIH guidelines and recommendations for the management of sickle cell disease (161 pages). Click the yellow button to go directly to the full document on the National Institutes of Health (NIH) web site.

Source: National Institutes of Health

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Dr. Wanda Whitten-Shurney's Passport to Health Toolkit is a great source of information for maintaining your health. (Join us for an educational program to receive the backpack that goes with it. *While supplies last!)

Source: Dr. Wanda Shurney

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Emergency room visits are a frequent course of action for people with sickle cell. The CDC provides this handout with suggestions for talking with physicians and navigating the experience. 

Source: Centers for Disease Control

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The American Society of Hematology (ASH) provides this clear and thorough handout with facts and figures to help educate yourself and others about the biology and impact of sickle cell disease.

Source: American Sociiety of Hematology

Looking for a hematologist?
Try this zip code-based search. (We do not endorse the physicians listed. Use proper care in researching their expertise.) You can also contact our office for suggestions provided by existing patients/clients. 
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Other informational resources

 

Sickle Cell Disease Association of America - Michigan Chapter
18516 James Couzens Fwy, Detroit, MI 48235

(313) 864-4406 OR (800) 842-0973

info@scdaami.org

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