I got an A!

Hey, I just got my grades for this last semester. I rocked out y'all! My GPA is 3.9 and I'm still banging out straight A's. Oh yeah, oh yeah *jumping up and down*

Anyway, in the spirit of giving, sharing and all that Jazz, I'm going to host the sickle cell presentation I created for my final class project, the one that earned me a resounding A+. The premise of the project is that we were supposed to identify a vulnerable population and develop an assessment tool for them. I created a sickle cell questionnaire...send me a message if you want that, and wrote a paper...and a PowerPoint presentation. It was only supposed to be one teaching tool and the paper, but I kinda went overboard...y'all know how passionate I can be.

Okay without further ado...

Sickle Cell Disease Teaching Presentation

View SlideShare presentation or Upload your own. (tags: sickle cell)

The Girl Effect

Road Trip!!!

So I just did a cross country road trip down 101. Whoever said people with sickle cell could not drive long distances obviously has never met me.

I drove 997 miles from Portland, OR to Santa Barbara, CA...all by my wonderful, fabulous self! Much to the consternation of my parents, who wanted me to take Norio or a friend, I packed up Viola (pictured right---->) and headed south.

The first day, I drove through the wintery, snowy passes of Oregon for five and a half hours, and stopped for the night at a hotel in Yreka, CA. I was listening to music, books on tape (The Camel Club by David Baldacci was amazing!), and talking on the phone to my friends and family.

The second day, I drove halfway to San Fransciso...then turned around about 150 miles to visit my friend in Chico, CA...about 70 miles from Sacramento. That was a 7 hour drive. My friend Shay is 8 months pregnant, and this would be the last time seeing her before she delivered her bundle of joy! I spent the night with her talking...and took off early the next morning.

The last day, I drove 9 hours...and drove through SF, stopped at the Nigerian store for foodstuffs and kept on going until I reached Santa Barbara. All in all, I would say it was an awesome first solo road trip. Here's to many more!

So far, no problems, just minor soreness and some aches at the end of the day, but I'm sure a regular driver would have had this as well. I took some Motrin with me which I had to take on days 2 and 3.

I'm feeling great now, I'm down here ready to start work. So here is to defying another sickle cell rule.

SickleSpace

Oh my goodness, i just was sent a link to the most interactive sickle cell forum on the web! It was started by an obviously tech savvy and funny fam. You can upload blogs, pix, links, videos and just pretty much everything else like you could on Myspace/Facebook and other social networking sites---but it's all about SCD.

Sign up here...and add me as your friend!


*I fixed the links!*

How Does Nicosan Work??

I got asked this question by one of my more inquisitive readers and I had to go searching for an answer! This is directly quoted from an article on Dr NDTV.com written by Dr. Kumar.

Nicosan is a phytochemical agent i.e. a chemical or nutrient derived from a plant source that is not required for normal functioning of the body but that nonetheless has a beneficial effect on health or an active role in the amelioration of disease. Thus, phytochemicals differ from traditional nutrients in that they are not a necessity for normal metabolism, and their absence will not result in a deficiency disease. It is made from four botanical species indigenous to Nigeria and consists of extract of Sorghum bicolor leaf, Pterocarpus osum stem, Piper guineensis seed and Eugenia caryophyllum flower.

The drug was granted orphan drug status by the United States Food and Drug Administration (2004) and the European Medicine Evaluation Agency (2005) and is currently classified as an orphan drug i.e. a drug used to treat rare diseases whose development may not offer the pharmaceutical industry a return on the research investment. The drug was developed at the Nigerian National Institute for Pharmaceutical Research and Development and has undergone Phase I, Phase IIa and IIb clinical trials and currently Phase III clinical trials are going on in Nigeria. The data shows that treatment with niprisan significantly reduced the frequency of sickle cell disease crises associated with severe pain during a six-month period (P < .01) and nearly 73% of patients achieved complete remission. Niprisan did not appear to cause acute hepatic or renal toxicity and no serious adverse events were reported. FDA approval is still pending though the drug is approved in Nigeria. Although its precise mechanism of action is not yet confirmed, it has been shown to inhibit red cell sickling in vitro by increasing solubility of sickle haemoglobin. Analysis of its effect on the Hb S oxygen affinity indicated that the drug slightly shifted the oxygen-dissociation curve of Hb S toward the left without any apparent change in the Hill coefficient. These results suggest that its anti-sickling properties may involve direct interaction with haemoglobin molecules.

Despite early trials showing a benefit, the Cochrane Collaborations review on phytochemicals for SCD noted that while Niprisan appeared to be safe and effective in reducing crises associated with severe pain over a six-month follow-up period of this trial, further trials are required to assess its role in the management of people with sickle cell disease.

It is as yet premature to say what the impact of this drug will be, however, users of the medicine claim to be symptom free for months. A diet rich in nutritional thiocyanate / dioscovite has anecdotally been shown to be effective in preventing red blood cell sickling in people with sickle cell disease. No clinical trials have been conducted and there are no published randomized controlled trials. Though not a cure, it is touted as controlling the symptoms associated with the disease.

Published on November 14, 2008 by Dr. Shirish Kumar, Consultant Haematologist, Sir Ganga Ram Hospital, New Delhi, India

New Adult SCD Study

The Adult Sickle Cell Quality of Life Measurement Information System
(ASCQ-Me) Project is creating a tool to help doctors and researchers
across the U.S. better understand what it's like for adults living
with sickle cell disease.

By understanding how sickle cell affects a person's daily life –
like how it affects sleeping, eating, being able to move around,
emotions and feelings, and the way people spend time with family and
friends – researchers can better determine the real effects of
different treatments and doctors may be better able to provide
high-quality care.

We want to find out what it's like to live with sickle cell disease
from the people who know best. We are seeking adults with sickle cell
disease to take the draft questionnaire.

All of the research is confidential and voluntary, and all participants
will receive $80 as thanks. If you live in the Baltimore/Washington area
and are interested in the study, please call 410-455-1586 to get more
information and see if you are eligible.

This project is being funded by the National Heart, Lung, and Blood
Institute (NHLBI).

Variations of Sickle Cell

Since sickle cell is a mutation of a strand of chromosomes, there are several different strains or variations. Here are the five most commonly documented:

Sickle cell trait: The person is carrying the defective gene, HbS, but also has some normal hemoglobin, HbA. Persons with sickle cell trait are usually without symptoms of the disease but have mild anemia. Under intense, stressful conditions, exhaustion, hypoxia (low oxygen), and/or severe infection, the sickling of the defective hemoglobin may occur and result in some complications associated with the sickle cell disease. This affects 1 in 12 African Americans.

Sickle cell anemia: The person has most or all of the normal hemoglobin (HbA) replaced with the sickle hemoglobin (HbS). It is the most common and most severe form of the sickle cell variations. These persons suffer from a variety of complications due to the shape and thickness of the sickled cells. Severe and chronic anemia is also a common characteristic for children with HbSS. This is what I have.

Sickle cell - hemoglobin C disease: The person has both HbS and HbC. This is often referred to as HbSC. Hemoglobin C causes red blood cells, called target cells, to develop. Having just some hemoglobin C and normal hemoglobin, this person might be mildy anemic. These persons often suffer some of the complications associated with SCD, but to a milder degree. Vaso-occlusive crises (the flow of blood is blocked because the sickled cells have become stuck in the blood vessels), organ damage from repeated sickling and anemia, and high risk for infection are all similar traits for HbSS and HbSC.

Sickle cell - hemoglobin E disease: This variation is similar to sickle cell-C disease except that an element has been replaced in the hemoglobin molecule and is often seen in Southeast Asia populations. Some persons with hemoglobin E disease are without symptoms. However, under certain conditions, such as exhaustion, hypoxia, severe infection, and/or iron deficiency, some mild to moderate anemia may occur.

Hemoglobin S-beta-thalassemia: This involves an inheritance of both the thalassemia and sickle cell genes. The disorder produces symptoms of moderate anemia and many of the same conditions associated with sickle cell disease. While this disorder more often has milder symptoms than sickle cell disease, it may also produce exacerbations as severe as those of sickle cell disease.

Diet For Sickle Cell Anemia

Apparently, people with sickle cell have lower levels of thiocynate in their blood, a compound and reduces 'sickling'. This is evidenced by those SCD patients living in the Caribbean or African countries who have very few painful episodes, but once they move to the US...they have much more flare ups. You need to continue the same diet you had back home, a diet rich in earthy foods like the following:

Foods Rich in Thiocynate
African yam
alfalfa sprouts
apricot
bamboo shoot
banana
bitter almond
broccoli
Brussels sprouts
buckwheat
buffalo berry
cabbage
carrot
cassava
cauliflower
cherry
chickpea
cloudberry
elderberry flaxseed
kohlrabi
lentils
lima bean
macadamia nuts
millet
mustard green
peaches
plantain
plums
radish sprouts
raspberry
red clover
rutabaga
salmonberry
sorghum
strawberry
turnips

The supplement Dioscovite has thiocynate as the active ingredient...so if you want to go that route, you can. Good luck!

Sickle Cell Diet

A couple of people have written asking me about the proper sickle cell diet. The best collection of sickle cell diet principles, menus and recipes that I've come across is in:

Back to Our Roots Food For the Gods, "Cooking for the control of sickle cell anemia and disease prevention" by Chef Dawud R. Ujamaa

You can get it from Amazon right here: http://www.amazon.com/Back-Our-Roots-Cooking-Prevention/dp/0805997695/ref=sr_1_1?ie=UTF8&qid=1228690267&sr=8-1


The best underlying principles are avoid fatty foods, those high in cholesterol and meat. Have a nutritious diet around lots of fruits, vegetables especially green leafy vegetables and lots and lots of water.