Hope For A Healthier Life – my journey and victory over Sickle cell

For those who have been following my ramblings over the past few years you’ll be unsurprised at what follows. I’ve been watching hundreds of posts on sites all over the world suggesting that Statins are the answer to bacterial infections in children with sickle cell. I wonder how many have actually read the paper that they were quoting from. The paper centres around the use of statins as anti-inflammatorys. They appear to suppress the cytokine response and the net result is that fewer bacteria get into the blood system and a lower incidence of death in mice.

Now I applaud the lateral thinking of those who came up with the research but my inclination is always to ’swim against the current’ – I started by looking at our own experience with sickle cell and huntingtons and the results we’ve seen (not scientific studies but consistent results based upon experience). A sugar called Trehalose has interested us for a number of years and if you do a little research about its activity with regard to inflammation (just google trehalose inflammation and see what comes up). Trehalose interrupts the cytokine process very early and has a very potent anti-inflammatory effect.

So my little mind is wondering why medical research is focussing on the worshipped statins – (they even want to give them to children now) and not on Trehalose – it could be the positive effects of Trehalose match or exceed the benefits of statins for these children with sickle cell. The huge advantage with trehalose is that there are no side effects – only benefits. Trehalose doesn’t make money for the drug companies – increased uses for stains would make huge profits for these predatory giants.

I would suggest that before trying Statins you try something that is natural and safe and possibly just as effective – maybe more effective.

Research affirms common sense. In our practical work with people with Sickle cell we’ve recognised that if you go out in the cold the liklihood of sickle pain increases as does the severity. This research, while interesting, only confirms what we knew already. Why does the pain increase in the cold? The reason is very clear to me in a common sense sort of way? The cold causes the blood vessels to constrict blood flow to the surface of the skin and to the limbs in order to conserve heat. Sadly that natural physiological effect has the effect of increasing the likelihood of blood vessels being blocked by blood cells sticking together – lack of oxygen leads to pain and cellular death.  So common sense advocates staying in and keeping warm. If you have to go out have many layers on both the legs and the rams and the head must be well protected.You can also use a product which is known to thin the blood (not asprin), use a product with L-Arginnine in it and drink plenty of water.

So thank you for this research but did we really need to spend this money to prove what we already knew.

For years, clinicians have routinely advised patients with sickle cell disease to dress warmly and avoid extremes of temperature, especially cold weather, based on laboratory evidence that more red blood cells undergo sickling with temperature changes.

According to lead author Wally R. Smith, M.D., professor of medicine and chair of the Division of Quality Health Care, the team has found for the first time that pain in adults with sickle cell disease is affected by climate and geographic location.

read more…

When I saw this article in a Birmingham newspaper today it reinforced a view that I’ve held for several years now. Our GPs are very often not looking for sickle cell and hence miss the opportunity to diagnose the full blow illness or even the less well known issues of SC Trait or even Thalessemia. This man and his family have paid a very high price. Please understand that I’m not advocating mass inoculation – it is a question of risk and education.

Payout for Marston Green man denied jab

Jan 6 2010

A MARSTON Green man who was left blind and disabled after blundering doctors failed to give him a ‘simple injection’ received a substantial payout last week.

Raymond Stanley, 42, who was born with Sickle Cell Disorder and thus susceptible to pneumococcal infections, was not given the recommended jab to prevent the deadly disease.

Over eight years, five different GPs failed to provide the former postman with the vital vaccine, which would have prevented him contracting the infection and suffering a heart attack. read more…

I’ve been working in this area of sickle cell, using a nutritional approach, for some 5 years now with some success, but I’ve always believed that the hidden problem of sickle cell trait should not be ignored as there are clear symptoms or indicators that suggest that the person may have latent health issues – as we are now seeing these issues can be life threatening. This report by  Brenda Wilson Published December 28, confirms my suspicions.

Fifteen athletes, most of them college football players, have died in the past decade from a condition that is benign in most circumstances. They were carrying the sickle cell trait.

Kourtni Livingston, a 14-year-old girl who played basketball for DeSoto High School near Dallas, died running laps outdoors in August 2002. Then University of Missouri linebacker Aaron O’Neal died during a voluntary workout in 2005. Devaughn Darling died shortly after complaining of dizziness and chest pains during off-season conditioning exercises in February 2001 at Florida State University. Experts have found that under conditions such as extreme exertion, high altitudes and hot climate, sickle cell trait is associated with a potentially deadly blood disorder called “sickling.”

read more…

I was reading an e mail today when i came across this news item which is just that (newsworthy). We have seen some interesting results with simple carbohydrate (sugar molecules) ourselves and this seems to link up. Also worth noting is that apple pectin may also be beneficial but we are unsure why this would be at this stage.

Former Idera Pharma CEO at Helm of AesRx, New Startup With Sickle Cell Drug

Ryan McBride 1/5/10

Stephen Seiler has been hunting for cash to advance an experimental therapy for sickle cell disease into initial human studies. And the veteran biotech executive, the former CEO of Cambridge, MA-based Idera Pharmaceuticals (NASDAQ:IDRA), has founded a startup in Newton, MA called AesRx to carry out his goal.

Seiler said he has provided an undisclosed amount of money from his own pocket to support the young startup, which was formed in November 2008. Now he’s looking to raise about $10 million in a Series A round of venture capital to advance the startup’s lead drug, called Aes-103, into a Phase I clinical trial next year for sickle cell disease. He’s making the case that the current treatments for sickle cell disease (sometimes called sickle cell anemia), which affects about 75,000 Americans, have left patients with far too few options to treat the genetic, lifelong illness that causes pain, infections, organ damage, and can often be deadly.

The firm’s drug is a small molecule called 5-hydroxymethyl-2-furfural, or 5HMF, which is derived from sugar and can be found in everything from caramel and cookies to prune juice. Based on preclinical studies, according to Seiler, there is evidence that the drug could be less toxic than previous treatments for sickle cell disease. For example, the standard treatment for the disease, called hyroxyurea, is typically prescribed only when patients are experiencing pain and other complications of sickle cell because it can cause side effects such as vomiting and lowered red blood cell production. And while bone marrow transplants have been able to cure the illness, there are challenges to making this therapy available to most patients because a matching donor is needed and it’s too expensive for them.

“Although it’s still pre-clinical, we know a lot about this drug,” Seiler said. “Therefore we believe our odds of success are better than a random pre-clinical compound.”

For now, the company is supporting some of its claims about the potential utility of its treatment with outside, peer-reviewed studies that validate the importance of the target that AesRx’s treatment binds with, as well as the drug’s intended mechanism of action. The compound was also studied extensively by researchers at Virginia Commonwealth University who first discovered its potential to treat sickle cell disease. (Seiler purchased the experimental drug after its former owner, New Jersey-based Xechem International, filed for Chapter 11 bankruptcy protection in fall 2008, he said.)

Medications that block folic acid during pregnancy can cause birth defects

by Paul Louis, staff writer

(Natural News) An epidemiological study in Israel that included 84,832 babies born at Soroka Medical Center, in Beer-Sheva concluded that medications taken during the first trimester that block folic acid more than double the risk of congenital malformations.

The study team involved Epidemiologists, Pediatricians, Clinical Pharmacologists, Obstetricians and Gynecologists who examined birth and abortion data collected in Israel between 1998 and 2007.

The medications that act as folic acid inhibitors are the antibiotics trimethoprim, sulfasalazine for treating ulcerative colitis, and the chemotherapy drug methotrexate. This group of drugs prevents folic acid from being converted to its active metabolites.

Anti-epileptic drugs and cholesterol lowering drugs are among the group of medications that lower serum and tissue concentrations of folic acid.

All about folic acid

Folic acid (B9) is also known as folate or folacin. It is essential for building new cells, and everyone needs it. But it is especially crucial for a woman’s physiological fetal function during pregnancy. Abundant folic acid during early pregnancy is important for preventing neurological and spinal birth defects.

Doctors are now recommending extra folic acid intake for women during the first trimester of pregnancy. Folic acid is abundant in leafy green vegetables, grains, dried beans, peas, nuts, and fruit. Adding daily supplements of folic acid is usually recommended.

The most common major birth defect from folic acid deficiency is spina bifida, or open spine. It is the result of the fetal spinal cord not closing completely during the first month of pregnancy. Nerve damage can result in the child’s paralysis of the legs, fluid in the brain, learning difficulties, and urinary or bowel problems. There is no cure for this birth defect.

Sources for this article include:

http://www.eurekalert.org/pub_relea…

http://www.nlm.nih.gov/medlineplus/…

http://www.nlm.nih.gov/medlineplus/…

http://www.upi.com/Health_News/2009…

http://visitbulgaria.info/11732-fol…

Wrap Up Warm

For those of us in the Northern Hemisphere winter will be rolling in soon and we need to get ourselves ready so that it does not catch us unaware. There are a lot of things you can do to keep yourself warm and healthy, which is the most important thing during winter. First of all I found out that if the weather is cold take warm drinks which helps to warm the body up and reserve heat in the body. Also eat regularly, instead of eating three full meals in the day try splitting it into six. You will find that, you have more energy and would not get cold easily.

Wrapping up warmly in winter, especially when going out, is very important, because those with sickle cell lose heat very quickly, it is advisable to wear a lot of warm clothing. The easiest places to loss heat is from the head, neck, hands and feet. That is why it is very important to keep them wrapped up, as for the head make sure you have a woollen hat or a cap that is warm and would cover the ears. Get a scarf to wrap round your neck, this would prevent heat loss from the neck. I found out that knitted gloves are not that warm, you can either get very warm gloves from shops that sell clothings for those that go hiking or out door sports. Or you can get hand warmers with the woollen gloves, these can be put in the pocket and they heat up to warm your hands. As for your feet make sure you get a good pair of boots, that you can wear socks in.

However do not forget your supplements, these would do you a world of good keeping up your health. Make sure you keep up your drinking of water, but making sure it is lukewarm not cold. Cold water or anything cold is a shock to the system, and you do not want to do this because it may set off a painful crisis. If you want to drink any thing hot you could go for green tea, with trehalose which is a healthy sugar, or any other fruit tea, but nothing with caffeine in it. Also remember your omega 3 it would help a lot with the joints.

Exercise is another good way of keeping yourself healthy and warm. Exercise little and often-  it helps to prevent muscle wastage, and keeps the body healthy and prevents you ageing prematurely. You do not need to join the gym, but simple exercises in doors would keep you in good health.

Ruth Akiboye

Paul Barton

I have long been a campaigner for help for people with sickle cell and have recently teamed up with Paul Barton. I know what it’s like and have suffered for years. In the last few years I’ve taken a different and much more proactive stance and as a result I’ve seen some remarkable improvements:

• haemoglobin levels increased by close to 10%
• virtually eliminated crises
• reduced sickling pain to very low levels and go long term without any pain

This e mail is to invite you to join in our ongoing exploration of what we as sickle cell sufferers is possible, without resorting to pharmaceutical intervention. If you don’t want to join in this discussion at the moment please click here and you can unsubscribe and won’t receive any e mails from here on. You can always come back at a later stage or you can watch the growing discussion on-line at our website Hope For A Healthier Life

If you’ve not listened to the earlier recordings about sickle cell with Dr Emil Mondoa MD then you can do so here.

Following surgery for Gall Bladder removal there are bound to be temporary digestive issues. This is mainly because of the difficulty faced by the body to dissolve and emulsify fats, after the gall bladder removal. Unmonitored, high-fat intake after the surgery, could result in diarrhoea or a feeling of bloating.

The diet should include:

• Lean meat, skinned fish and chicken
• Eggs
• Skimmed milk
• Low fat cheese, yogurts and spreads
• Soups
• Salads
• Grilled fish and chicken
• Legumes

Foods that need to be avoided:

• Fried foods
• Spicy food
• Whole grain breads
• Cereals, seeds and nuts
• Baked beans
• Broccoli
• Cabbage
• Brussels sprouts
• Cauliflower
• Peanuts
• Pastries

After the removal of the gall bladder, it is very essential to maintain a low carbohydrate and high protein diet. Cooking meat and fish at low temperatures and draining off the released fats helps a lot. It is also advisable to adopt six smaller meals rather than three large ones. Without the gall bladder, digestion does become difficult and hence this shift in the diet plan is required. A liquid diet for some time is ideal. However, if it is not completely possible, then you could consider semi liquid meal components that are non-fatty and low-carb, essentially.

Studies indicate that the obesity epidemic starts at an early age. Approximately 80% of children who were obese during their youth (10 to 15 years of age) became obese adults by the age of 25. Additionally, if children are overweight before they’re eight years old, then their adult obesity will be more severe.

Childhood obesity is linked with high blood pressure, high cholesterol, type 2 diabetes, cardiovascular disease and a wide range of health problems. Yet, no single factor is said to cause overweight children, but rather a combination of genetic, behavioural and environmental factors.

At its most basic level, obesity epidemic is caused by the consumption of more calories than the child can use, which causes the remaining calories to be stored as fat.

Obesity

In rare cases, genetics can play a role in the obesity of children with Prader-Willi syndrome, although behavioural factors, like the consumption of high calorie foods, minimal physical activity and a lack of supervision, are more likely contributors to weight gain.

More vending machines offering fattening foods have popped up in schools and suburban bus commutes keep kids from walking or riding their bikes to school.

If left untreated, childhood obesity can lead to a number of problems, both physical and psychosocial. Physically, 70% of obese 5 to 17-year-olds have at least one cardiovascular disease risk factor already, whether it is high blood pressure, high cholesterol or abnormal glucose tolerance, and 25% have at least two risk factors.

Diet & Nutrition

Obesity is also the leading cause of diabetes endocrinology, as 60% of diabetics are also overweight. More immediate health problems include sleep apnea, hepatic steatosis (fatty degeneration of the liver), kidney failure and asthma. Psychologically, obese adolescents become the targets of social stigmatization, which can leave lasting emotional scars that may never fully heal.

To combat childhood obesity, be sure to encourage diet nutrition . Serve nutritious dinners and encourage healthy snacking by offering fruits and vegetables, rather than chips and cookies.

Helping your son or daughter to stay active will not only prevent excessive weight gain, but it will also improve self esteem and coordination, reduce stress and anxiety, decrease blood pressure and strengthen bones.

Type 2 Diabetes

Instead of letting your child “veg out” in front of the TV or computer for hours each day, encourage after-school sports, bike rides, karate, swimming, dance and other physical activities.

In households where carbonated beverages and sugary snacks are always served, it can be hard to maintain control.