At long last the sickle cell guide is ready. The challenge we’ve faced is to make it as complete as possible while not too large. It is still a work in progress and just this morning we had a major ah ha moment when we recognised a bit more information that might be vital but as with everything we’ve seen we have to test it first. Come back soon and we may have more information for you.
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I Saw this article via twitter and couldn’t help but be encouraged that a prominent man is raising the game re sickle cell and thalassaemia. I’m still very concerened that once they have been diagnosed as eiether carrying the trait of having full sickle cell that there really is no treatment options only management.
The real truth lies in the fact that a well managed diet, an active lifestyle and some quality nutrient dense food (supplemented where necessary) is so effective at keeping the pain under control. However, while we remain under the control of Government and the medical profession via the pharmaceutical companies things will get no better.
Education is what is needed first, then support, research into drugs is importnat but should not be the first port of call.
Wednesday 18 March 2009
The Archbishop of York today praised the work of the NHS Sickle Cell and Thalassaemia Screening Programme after the announcement of a 100 percent roll-out of its antenatal screening programme in England.
As a result of this programme, all women receiving antenatal care in England will be offered screening for the serious genetic diseases sickle cell and thalassaemia.
Meeting a promise set out in the 2000 NHS Plan, this service joins the already established newborn screening programme which ensures that every baby born is offered screening for sickle cell. This is now identifying 350 affected babies every year. In England, sickle cell affects an estimated 13,500 people with an estimated 240,000 carriers; this makes it the most common genetic disease in the England – affecting more people Cystic Fibrosis
The Most Reverend & Rt, Hon Dr John Sentamu, Archbishop of York, who has been Chair of the Screening Programme since 2001 commented:
“I whole-heartedly congratulate the NHS Sickle Cell and Thalassaemia Screening Programme as it formally celebrates the full roll out of antenatal and newborn screening.
“By offering screening to all pregnant women and babies, we can now support couples to make informed decisions and also ensure that babies receive the immediate care they need. I am delighted that sickle cell and thalassaemia are finally getting the recognition they deserve as serious genetic diseases affecting some of the most marginalised groups in our society. This is an important step in both providing better care and tackling serious health inequalities. The next challenge is to ensure that effective screening is backed by high quality care for those living with the diseases. I will continue to support the Programme’s efforts and the invaluable work it does. Together with newborn screening, these programmes together form the world’s first linked antenatal and newborn screening programme – a model for genetic screening which has already attracted interest internationally.”
Dr Allison Streetly, Director of the NHS Sickle Cell and Thalassaemia Screening Programme, explains:
“Realising this goal means that every pregnant woman in England, no matter where she lives, will now be offered screening for sickle cell disease and thalassaemia. This is huge progress considering that less than ten years ago screening was rarely available even in areas where sickle cell and thalassaemia were common. Screening identifies not only people with the disease but also genetic carriers, ensuring in the long-term, individuals and couples will have the option of making informed decisions before they have a child.”
Dietary Factors and Supplements
Foods. Good nutrition is essential for anyone and critical for patients with sickle cell disease. Some dietary recommendations include:
- Fluids are number one in importance. The patient should drink as much water as possible each day to prevent dehydration. Female patients may want to include cranberry juice to help prevent urinary tract infections.
- It is important to have 5 – 9 daily servings of green, red, and yellow vegetables, fruits, or juices that are rich in antioxidants and other important nutrients. Some research suggests that antioxidant foods or supplements (such as vitamins E or C) may help inhibit the formation of the dense cells that trigger a sickle cell crisis. One medical group has created a “cocktail” of supplements and food extracts that are rich in antioxidants and iron-binding compounds that might have more protective effects on the sickling process than single antioxidants. It includes garlic extract, black and green tea extract, pycnogenol, alpha-lipoic acid, vitamin E, coenzyme Q10, and beta-carotene. In any case, patients might eat foods containing these extracts and take supplements of the antioxidant vitamins E and C if their diet does not adequately supply them.
- The chemical resveratrol, which is found in red grape skins, appears to have properties similar to hydroxyurea, the primary drug used in sickle cell disease. Drinking great amounts of grape juice is unlikely to make much difference, but adding it to a child’s diet is unlikely to do harm.
- Protein is important for sickle cell patients.
- Studies on omega-three fatty acids, found in fish and soybean oil, suggest that they might make red blood cell membranes less fragile, and possibly less likely to sickle, although no studies have proven this definitively. Fish and soy products have health benefits in any case. In one small study, fish oil supplements reduced the frequency of painful episodes over the course of a year.
Minerals and Other Natural Substances .
- Zinc. Zinc sulphate appears to help reduce red blood cell dehydration. Important studies indicate that it helps prevent sickle cell crises and reduce pain and life-threatening complications. A study on children with sickle cell suggested that supplements may help improve growth and weight gain. It may also boost the immune system and help protect against bacterial infections. Zinc deficiency is a common nutritional problem in sickle cell disease, so supplements may important.
- Magnesium. Magnesium protects against potassium and water loss in sickle cells. Small studies are reporting promise for its use in preventing dehydration and increasing hemoglobin S concentration.
- Arginine. Arginine is an amino acid that the body converts to nitric oxide, a natural substance that relaxes blood vessels. The sickle cell process reduces nitric oxide levels, which may be responsible for much of the pain in these patients. Arginine and other substances that convert to nitric oxide are being studied in trials.
- L-glutamine is an ordinary amino acid that is heavily used by sickle cells. One study using supplements of this substance reported that after a month it caused positive changes in the blood. Another small study found that daily oral glutamine supplementation improved growth and nutritional measures in children and adolescents with sickle cell disease.
Vitamins. Patients should take daily folic acid and vitamin B12 and B6 supplements. Vitamin B6 may have specific anti-sickling properties. Some experts recommend 1 mg folic acid, 6 microgram vitamin B12, and 6 mg vitamin B6. Foods containing one or all of these vitamins include meats, oily fish, poultry, whole grains, dried fortified cereals, soybeans, avocados, baked potatoes with skins, watermelon, plantains, bananas, peanuts, and brewer’s yeast. Of note, folic acid can mask pernicious anemia, which is caused by deficiency of vitamin B12 and is more common in African-Americans than other populations.
I don’t begin to understand what the money controllers in this country have done to us and how they brought about this market crash. All I know is that it’s going to make everything around us cost more. That includes food.
It was mostly a novelty for me when I first started making my own soymilk. I had been buying my soymilk in the grocery and didn’t even know for along time that I could make it myself. I mean, who makes milk? I don’t live on a dairy farm, so my only access to cow’s milk was the grocery store. So when I made the switch to soy, it didn’t even occur to me that this could turn into a do-it-yourself project.
Luxury Becomes a Need?
Making my own soymilk was absolute luxury. I was a step up from folks that were still buying this drink in stores because I had the ability to control what I put in my soymilk and how I wanted it to taste. Then I learned how to make tofu and soy yogurt. My luxury continued.
My opinion about this food source has quickly changed. My Soymilk Maker has become my most valued piece of kitchen equipment. It’s now a necessity!
The finacial burden of meat-based diets could soon grow beyond belief. What is the cost of a pound of meat? What will it become? How many meals can a pound of meat make? What’s the cost of a pound of soybeans? Right now, it averages 2 dollars. What will it become? It’ll be much less than meat.
Will Soy Become Survival Food?
You can do a lot of things with a pound of soybeans. You can make 5 pots of soymilk. You could use one of those pots to make a block of tofu. One pot of soymilk can make seven servings of yogurt. Also from those 5 pots, you’ll get almost 4 cups of okara, which can easily become 20 soy burgers.
The upside to all of this; soy is healthy. It’s a perfect protein food. It’s high in fiber and loaded with minerals. This may not be the best time to invest in the stock market, but it’s a great time to invest in health and food. An additional note: dry soybeans have a long shelf life when stored in tightly sealed containers.
Click below to listen to the Oct 2007 update on Ruth Akiboyes progress.
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In this audio you will learn about:
- The root of sickle cell
- The cause of sickle cell
- Why we need to take folic acid
- Why those with sickle cell should not take iron
- The importance of glyconutrients in the body
- Other sugars that help the body
- The importance of the spleen, and what can go wrong
- Questions about the spleen
Click on the link below to listen to the last in the series of 4 calls about Sickle cell.
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In this audio you will learn about:
- what causes constipation
- colon health
- Reasons for antibiotics in sickle cell
- why the liver does not work properly in those with sickle cell
- Information on the liver and gall bladder
- Information on beetroot
- The reason why the body temperature rises if you are unwell
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Water is critical in terms of life itself but even more so if you have sickle cell. Without adequate water the
body will begin to remove water from areas within itself and one of those areas is the blood system. If you are 5% dehydrated that effect can be multuiplied several times by the body removing water from the blood.
The consequence is that the blood gets thicker and the clumping together of mis formed, or sickle shaped, cells become more prominent. Net effect is that the crisis becomes more severe and the pain goes through the roof as more cells and tissues become deprived of oxygen.
It is for this reason principally that when someone gets taken to hospital with a sickle cell crisis that they get put on a glucose/saline drip to rapidly rehydrate the blood stream. Doing this c
an in some instances alleviate the crisis.
This is one of the 4 pillars of wisdom regarding Sickle Cell.
