I attended the Seattle Sickle Cell Task Force lunch and learn 11/10/18 presented by Tamika Moseley.
Tamika shared information about her and her son’s experience with sickle cell disease including medical care and herbal remedies. As a member of a medical practice team I don’t have experience with the herbal remedies Tamika discussed. She shared the most successful herbal product Evenflo has been studied in Kenya and will be published. I think this is the right step forward. Scientific studies with published data will provide both families and medical providers with the information we all need to feel comfortable with concurrent alternative medicine (CAM) therapies. I see herbal remedies (CAM therapies) as potential additional tools for the battle of sickle cell disease. Once studied and proven safe for use and that it is a help to sickle cell patients, I will support it and offer it to families. Until those studies are shared, I cannot endorse any product.
I do not recommend removing proven scientific therapies like penicillin, hydroxyurea or immunizations. I strongly recommend routine yearly screening appointments with a medical provider familiar with sickle cell. It is very important to test early for issues with the eyes, kidneys, lungs, brain, etc, that might not be felt by the individual until the damage has already occurred and is irreversible.
Sickle cell disease has medical tools to offer patients and families to bring to their battle. The medical tools we have are making huge improvements in outcome. Penicillin made a difference in life expectancy by protecting our youngest patients through their most vulnerable years. Life expectancy pre penicillin prophylaxis was about 18 years old. Today life expectancy reports are in the 40’s for Hgb SS and 60’s for Hgb SC (https://www.ncbi.nlm.nih.gov/pubmed/7993409). Folic acid is a standard vitamin prescribed to help boost red blood cell production. The patient with sickle cell can only produce red blood cells that sickle and are fragile causing anemia and problems with blood flow. Studies proved Hydroxyurea safe for use in young patients (9 months old). Hydroxyurea causes bone marrow production of healthy fetal hemoglobin which is not fragile and does not cause problems with blood flow. Studies of hydroxyurea in adults, children and infants “demonstrated a reduction in mortality with long-term hydroxyurea use”. “Evidence from several randomized trials and observational studies has demonstrated a reduction in Sickle Cell Disease complications with hydroxyurea therapy”. (https://www.uptodate.com/contents/hydroxyurea-use-in-sickle-cell-disease#H2549716608). Protecting the eyes, kidneys, lungs, brain, etc. of sickle cell patients will have positive effects on life expectancy for even the most severe forms of sickle cell disease and we will see improvements in life expectancy statistics.
I welcome proven tools to provide to parents of children diagnosed with sickle cell disease. Recently L-glutamine (Endari) an amino acid supplement completed studies and has been approved for use in patients over age 5 who qualify. Local hematology clinics are excited to talk to families about Endari.
Tamika’s handouts quoted ‘Knowledge is Power’, I agree wholeheartedly. I look forward to the proofs of herbal therapies. Together we will be strong in the battle of sickle cell disease.
Trinna Bloomquist, RN, BSN
Mary Bridge Children’s Hospital