SICKLE CELL - A PARENTS GUIDE

1 - I can do better 2 - Jury's out 3 - Pretty darn good 4 - Splendiferous 5 - Awesometastic by 6 people | Log in to rate

Ranked #1,299 in Family, #29,767 overall

SICKLE CELL PARENTS GUIDE

sickle cell parents guide
Get your complementary Parents Guide to Sickle Cell Sickle Cell was very poorly understood as recently as 1960. It existed we just didn't understand it. Today we understand sickle cell (often referred to as sickle cell anaemia, sickle-cell or sicklecell) but as yet there is no cure. There is a hope of a cure based upon stem cells but so far Sickle Cell is essentially incurable. Pharmaceutical drugs don't work well with Sickle Cell in the long term and our focus has been on management of the condition. So we work to help parents and adults help their children and themselves to live full and productive lives.

Sickle Cell - Updated Parents Guide - is here

The Parents Guide To Sickle Cell version 2 is here please e mail me for a free copy

The Essence Of Living With Sickle Cell 

you need to understand this

These guidelines are born out of simple common sense and experience and are in no particular order.
  • avoid getting cold. If you get cold the arms and legs will experience reduced blood flow in order to maintain the core body temperature. The restricted blood flow to the extremities means that any sickling will be amplified. Lesson Stay Warm.
  • If you get dehydrated - then expect the sickling to get worse. Just 5% dehydration can massively increase the severity of sickling because the water removed from the blood stream will make the blood stickier and increase the likelihood of sickling. Flying over a few hours will result in dehydration - so drink plenty of water. - Lesson Stay Hydrated.
  • Eat foods closest to their natural state (excluding chicken and meat) in order to get the maximum nutritional value from the food. Avoid regular and heavy consumption of starchy foods as it would seem to stress the blood system and often leads to mild sickle pain. Lesson - Eat Foods with as little processing as possible

Sickle Cell Anemia - Prognosis 

You have a choice

Frankly the prognosis of sickle cell anaemia used to be very poor with many people not getting beyond early childhood. Today, things are much better sadly not because the medical treatment and cure options are better but because of earlier diagnosis and better use of things like antibiotics to reduce the incidence of serious illness.
However, because of a better understanding of the triggers of sickle cell crises you now have a choice of options. Avoidance of situations that can trigger crises is where you should start. Diet, Water, exercise, lifestyle and supplementation all play a part in your health choices.
In my opinion the prognosis for sickle cell sufferers today is better than its ever been and as we worth together we have the real possibility of enabling sickle cell become a managed problem rather than a life limiting one.

WHAT WORKS FOR YOU 

your ideas work and help others

Most of what we've done is bring together what works for people and adapt and develop the ideas even further. Your contribution might just help someone else.

use glyconutrients daily

2-3 teaspoons of the original formula daily mixed more...3 points

avoid cold weather

stay in the warm and dress up well - avoid thermal more...2 points

eat 6 Apricot kernels per day

2 points

cold pressed beetroot juice

1 point

clean pure welness water

for adults 2-3 litres per day for children rather more...1 point

use cold pressed apricot kernnel oil daily

1 or 2 teaspoons per day1 point

eat dicoteledon yams

avoid American Yams - they are mono cotelydon yams1 point

use phytonutrients daily

use 2-3 teaspoons of powdered fruit and vegetable more...1 point

Use 6 teaspoons of Trehalose daily

Trehalose is a plant sugar that seems to assist th more...1 point

Please Send Me More Information about Sickle Cell 

Please note that will will never sell or pass on your details to anyone else

First name

Last name

Country

Phone #1

E-mail address

Other Sickle Cell Resources 

Nitric Oxide and Sickle Cell
Research into Sickle Cell as recently as 2005 suggests that an inability of red blood cells to relax blood vessels through the release of nitric oxide is a major factor behind the disease's primary symptoms -- including oxygen deprivation and blocked vessels that can lead to pain, clots and stroke.
sickle cell and trehalose
This looks like an unlikely combination but what we've found is that combining various dietary and nutritionally lead approaches to Sickle Cell with Trehalose has produced results that we couldn't have dreamed of. We have to be honest but some of what we are seeing in terms of the effects of Trehalo

Trehalose 

Trehalose is a natural plant sugar that appears to have some benefits with sickle cell. The Heamoglobin molecule is characterised by a misfolded protein it is quite possible (although not yet proven) that the misfolding can be limited or even reduced by the use of specific plant sugars and amino acids.

Trehalose | Safe | Healthy | Even Beneficial to Health
|Learn about Trehalose and how it can aid healthful living. It is a viable, natural alternative to sucrose (white table sugar) and research suggests that it is a good alternative natural sweetener and much better than Aspartame or Nutra Sweet.When eaten it has a very low effect on the blood glucose levels.

Vital Information for You

Listen to what a doctor says and real life stories
Support For Parents

Conference Calls - Recorded 

support for families and sickle cell sufferers

Over the last few years we have recorded several great calls with Dr Emil Mondoa, Author of Sugars That Heal, and we've managed to post them on one of our blogs
Listen to A Doctor's Perspective On Sickle Cell

My Own Experience with Sickle Cell 

Loading Fetching RSS feed... please stand by

Beetroot and Sickle Cell 

Beetroot can be purchased as a raw vegetable to prepare yourself in a variety of ways. Like all fresh foods, use as soon after purchase as possible in order to reap the benefits of this wonderful nutritional vegetable - particularly important if you have sickle cell. Freshly purchased raw beets can be stored in the fridge for a maximum of three days. Prepared beetroot is readily available (but not as good) whole in vacuum-packed bags in the greengrocery section and is ideal for picnics or lunch boxes. The most recognisable form of beetroot is the pre-prepared option which is sold in glass jars in the UK (tins in the US) with a sealed, twisting lid. With this you have the choice of 'baby beets' which are a small whole, perfectly round and sexy foodstuff; or the larger, thinly sliced beetroot which is perfect for sandwiches.

Preparation

Raw

Prepare beetroot for eating raw by cutting off the tops and then peeling3 with a potato peeler. Beetroot can be grated, tossed with a little orange juice and eaten raw. Pigment in beetroot is light-sensitive and will turn brown on exposure to light, so use it up quickly. Remember to save any peelings and vegetable waste for your compost heap.

Cooked

When cooking beetroot you should always cook it whole, after snipping off the stalks. Wash the beet under cold water before cooking, don't pierce the skin and resist the urge to top and tail like carrots (do not cut off the crown and base). Apart from the staining this would cause, the beet would also lose its flavour.

Boil or steam: Beetroot can be boiled or steamed (beware of staining your walls and ceilings) for 20-60 minutes depending on its size. It is cooked when you can pierce it easily with a skewer. Allow to cool and then the skin will slip easily off. It might be wise to have dedicated beetroot paraphernalia because of the staining issue.

Baked: Wash the beet, trim the stalk and wrap each beetroot separately in foil. Place in a moderate oven for about 40 minutes (for small beets), then serve with seasonal vegetables. Large beets, up to about a kilo in weight, can take up to four hours to bake.

Purée: Reduce it to mush and add to home-made baby food; mashed potato; home-made soups; and vegetable smoothies.

Pickled: This is the most common way (in the UK) of using and storing beetroot; the sliced or 'baby' beets can then be dished up as required. Be aware that once the sealed jar is opened, the beetroot will start to turn brown so the contents should be used up as soon as possible.

Tip: Don't throw away the beetroot stalks and leaves, they are nutritious and should be treated in the same way as spinach. The greens have nutritional value, containing folate (important for Sickle Cell), iron, potassium and some vitamin C. Chop up finely and add it to quiches, curries and stir-fries, or mix with onion and garlic and serve as a dip.

Origin and Distribution of Sickle Cell Disease 

Sickle cell trait occurred as a natural mutation of the hemoglobin gene. Sickle trait seems to be related to having a natural protective mechanism against malaria but the exact mechanism is unclear. Malaria is a deadly disease found in countries along the equator. People with sickle cell trait are protected from malaria while those with sickle cell anemia and normal hemoglobin are susceptible to it. Over the years people with sickle trait migrated to other continents.

Sickle cell disease is seen predominantly in the black population but is also seen in people of other ethnic groups. These ethnic groups include individuals from parts of the Middle East, Central India, and countries bordering the Mediterranean Sea, especially Italy and Greece.

Genetics Of Sickle Cell 

Sickle Cell Anemia (SS) is an inherited blood disorder (autosomal recessive). Approximately one in 400 black babies are born with Sickle Cell Anemia, and about one in Ii have Sickle Cell Trait (AS).

The two hemoglobin types inherited will determine the shape of the red blood cell (RBC). When both parents have Sickle Cell Trait, there is a l-in-4 chance (25 percent) the baby will have normal hemoglobin (AA), a 50 percent chance the baby will have Sickle Cell Trait (AS), and a l-in-4 chance (25 percent) the baby will have Sickle Cell Anemia (SS). These chances remain the same with each pregnancy.

Sickle Hemoglobin C Disease 

Sickle Hemoglobin C (SC Disease) is a milder form of Sickle Cell Disease. The baby has inherited two (2) abnormal hemoglobins, hemoglobin S and hemoglobin C. Approximately one in l,000 black babies are born with SC Disease. Hemoglobin C Trail (AC) occurs in about one 1n 40 black babies. If one parent has AS and the other AC, there is a 1-in-4 chance (25 percent) the baby will inherit AA, AS, AC, or SC Disease.

'AS and AC are carrier states, not disease conditions but may still be affected with mild symptoms.

Sickle Beta Zero Thalassemia 

Sickle Beta Zero Thalassemia (ST0) is clinically similar to Sickle Cell Anemia. STO occurs in approximately one in 10,000 black babies. STO is treated the same as Sickle Cell Anemia.

When one parent has Sickle Trait (AS) and the other parent has Beta Thalassemia Zero Trait (AT) there is a l-in-4 chance the baby will have normal hemoglobin (AA), Beta Thalasseinia Zero Trait (AT, Sickle Beta Zero Thalassemia (STO), or Sickle Trait (AS). These chances remain the same for each pregnancy.

Genetics and How It affects Families 

Sickle Cell Video 

Trehalose - Sickle Cell

a brief introduction to trehalose and sickle cell

Runtime: 290
149 views
0 Comments:

curated content from YouTube

We'd Like to hear what you think 

submit
  • Reply
    PreCap2 PreCap2 Jun 15, 2009 @ 6:32 am
    This sickle cell issue is a very touchy one for me. I have watched a child grow before me and die without becoming any real human for one full day. I shall not let it happen again if ever I can. I think I should start spreading the news of your lens. I got something new here.
    For free natural health recipe for many ailments Check Out

Love This Lens? 

If you would like to rate this lens, then you can do so here (Squidoo members only)

Add this to your lens »

by paulbarton

My name is Paul barton and I live in the UK but work all over the world. My driving passion is my family and my personal goals and my faith in Jesus....

(more)

Explore related pages

Create a Lens!