Frequently Asked Questions by sufferers and families




Questions from sufferers and their families

The purpose of the Sickle Cell Cure Foundation is bring an inexpensive, effective, and safe treatment for sickle-cell anemia into widespread use. We are keenly aware of the suffering of victims and their families. As researchers, our ability to respond to individual needs for medical advice is limited. However, we offer the following questions and answers in an attempt to help people to find appropriate assistance while the search for more effective treatments continues.


How do I find a qualified sickle-cell physician?

Look for someone in your area with a specialty in “hematology,” the study of blood disorders. The American Society of Hematology provides an on-line database of registered hematologists: Find a Hematologist where you can search for specialists in your area. U.S.News & World Report has compiled a searchable list of doctors organized by specialty: Hematologists. The following list may lead families to experts in their country. 

Sickle Cell Foundation Nigeria
Bahrain Society for Sickle Cell Anaemia Patients Care
Sickle Cell Association of Uganda
The Sickle Cell Information Center provides an extensive list of world-wide contacts.
Sickle Cell Awareness Group of Ontario
The US Center for Disease Control (CDC) assembled a state-by-state directory of sickle-cell organizations in 2011.



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What are the current treatments for sickle-cell disease and how do they differ?

The table below presents the commonly employed current treatments for comparison purposes and to help families to ask informed questions of their physicians.  This is not medical advice for particular patients or situations, but instead a description of the various treatment options.

Treatment Purpose  Other Effects  Cost and Duration
Antibiotics, such as penicillin Control secondary infections  Bowel disorders.  Risk of antibiotic resistent strains developing, if schedule not followed carefully.  Inexpensive, long term.
Painkillers, such as Paracetamol, acetaminophen, nonsteroidal anti-inflammatory drugs, and narcotics Alleviate pain. Risk of kidney damage from actaminophen.  Risk of narcotic addiction.  Varies.
Blood transfusion Prevent organ damage and alleviate pain  Long-term iron overload may occur. Crisis treatment.
Bone-marrow transplant  Cures sickle cell formation.  The procedure creates the risk of infection.  The transplanted tissue may be rejected.  Expensive, requires compatible donor who may be very difficult to find.
Diet modification, such as additional folic acid.  Reduce sickling of red blood cells. Seek advice from a physician.  Dangerous side effects sometimes occur.  Ongoing.
Chemotherapy, such as hydroxyurea  Lessen crisis frequency.  Potential increased anemia.  Potentially carcinogenic. Expensive daily dosage


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What can victims do about the pain?

First, sufferers need to avoid situations that have greater risk of triggering a painful episode.  These include:
Reduced body temperature, such as bathing in cold water or cold weather,
Dehydration, such as outdoor exertion, or
Lower ambient oxygen, such as higher altitudes, airplanes, or air pollution.

All these factors increase the risk of sickling or inhibit the production of red blood cells.  So, caution is advised in travel (especially by airplane), colder weather, exercise, and diet.  Avoiding too much salt, and drinking water copiously should help.

Once pain has begun, a few home-based tactics should help.  These suggestions are not intended to supplant expert medical care. Sickle-cell patients should obtain and follow the guidance of their local medical professionals.  Expert medical care always should be sought, because health-care providers have other options, such as oxygen, intravenous fluids, blood transfusion, hydroxyurea, and prescription pain medications.  Females should discuss hormone therapy with their caregiver, if painful menses occur.



Over-the-counter pain medication, such as ibuprofen, naproxen, or  acetaminophen.  Of course, dosage limitations (example) should be observed.
Heating pads or warm baths.
If air travel is necessary, investigate supplemental oxygen, and drink plenty of water.

 


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Why can’t we get the cure now?

The objective of our non-profit foundation is to demonstrate, prove, and distribute a safe, effective, and inexpensive treatment for sickle-cell disease. The staff are biologists and chemists with volunteer assistants, and our focus is to expedite the drug development. As yet, our selected approach is not yet proven safe and effective. Our team does not consist of practicing physicians and cannot treat and monitor patient health. Indeed, it would be unethical and illegal in the United States for us to do so.

However, we intend to conduct clinical trials. We cannot now predict when and where the first trials will occur. Before then, we must successfully complete ongoing animal trials, which will last at least another year or more (as of September, 2013).


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