Wednesday, March 31, 2010

How to Join Sickle Cell Trials & Studies

Have you ever wanted to enroll or participate in a research study or program involving sickle cell and didn't know where to start?

Well Veronica (of Break Sickle Silence) shared with us on the Sickle Cell Warrior Facebook page a valuable website that I just had to share with all of you.

Go to and do a search for "Sickle Cell" and your location. This will bring up all the government sponsored SCD trials close to you. You can narrow the results by those Actively Recruiting, choose the one that you are interested in, and then more info of the study, and contact info will open.

It might take some searching to find the best program for you...but if each of us participated in just one study in our lifetime, then we are actively helping find a cure to sickle cell! Be a part of the solution darlings!

I did a preliminary search, all you have to do to get started is click right here.

Sunday, March 28, 2010

Sickle Cell Award

Dear Sickle Cell Warrior,

You have been identified as a leader in the Sickle Cell Anemia community. By sharing your personal, first-hand experiences with this disorder on your blog (Sickle Cell Can Kiss My A**!!!), you have helped others. AccessDNA's mission is to help increase the awareness of both rare and common genetic disorders by creating accessible and reliable information on genetic conditions. We respect your efforts and are privileged to distinguish your blog with the following award:

AccessDNA community leader badge graphic

Thanks again, and we look forward to working together to improve disease treatment and management options!

Jordanna Joaquina, MS, CGC
Director of Genetics and Co-Founder

Awwwww....thanks! I'm just doing my part in raising sickle cell awareness. I appreciate the honor.

Saturday, March 27, 2010

'Mini' Transplant May Reverse Severe Sickle Cell Disease

Results of a preliminary study by scientists at the National Institutes of Health and Johns Hopkins show that "mini" stem cell transplantation may safely reverse severe sickle cell disease in adults.

The phase I/II study to establish safety of the procedure, published December 10 in the New England Journal of Medicine, describes 10 patients with severe sickle cell disease who received intravenous transplants of blood-forming stem cells. The transplanted stem cells came from the peripheral blood of healthy related donors matched to the patients' tissue types.

Using this procedure, nine of 10 patients treated have normal red blood cells and reversal of organ damage caused by the disease.

This is a new type of transplant, a little different from the other one. In this study, the patient's bone marrow is not completely annihilated, but smaller portions of it are killed off, to make room for the newly transplanted cells. The sickled cells co-exist with newly implanted 'normal' cells, but the normal cells are in a higher concentration, thereby limiting sickle cell pain and complications.

The study is still in early research phases, but here is another bold step towards finding a solution to sickle cell disease. 

Read the Full Article HERE.
Source: Johns Hopkins Medical Institutions (2009, December 10). 'Mini' transplant may reverse severe sickle cell disease. ScienceDaily.

Thursday, March 18, 2010

Sickle Cell Patient Dies in Bahrain:(

To all my sickle cell warriors in other countries, my heart goes out to you. I know that we mostly talk about the care in the US, and I know that at times, the care in other places can be even more difficult than what we have over here. Wherever you are, whatever your struggle, know that you are not alone.
SIXTH sickle cell patient in just over two months has died at Salmaniya Medical Complex (BAHRAIN ), it emerged yesterday. The latest victim is 19-year-old Saudi Ahmed Yousif Al Jassim, who lived in Ma'ameer. He arrived at the Accident and Emergency Department at around 10am on Saturday, complaining of severe body pain, according to campaigners.

There were no beds available in the department, so he was admitted to Ward 44, said Bahrain Society for Sickle Cell Anaemia Patient Care chairman Zakareya Ebrahim Alkadhem.

"Doctors at the department said he needed to be admitted to Intensive Care Unit (ICU), but there was no bed available, so they shifted him to the ward," said Mr Alkadhem.

"There was at that time no bed in the Resuscitation Room as well as the ICU."
Mr Alkadhem claimed that Mr Al Jassim's condition deteriorated rapidly and cardio-pulmonary resuscitation (CPR) was called for around 3pm and then again at 5pm.
"However, Mr Al Jassim passed away at around 5.30pm, when he failed to come out of the second CPR," he said.

Read the full story HERE. This is so sad. It could have been prevented. We lost another one.

Wednesday, March 17, 2010

Sickle Cell Rules

On the SCW Facebook page, there is a mention of the rules of sickle cell, and that once you know the rules, you have a leg up in managing your condition and living a wonderfully vibrant life.

The rules are not steadfast, and of course depend on the individual; but it's something that most sickle cell warriors have had to learn, some the hard way. I must confess, that even though my mom drilled most of the rules into me when I was younger, I ended up ignoring; or disobeying them, much to my detriment as I spent days later in a painful crises.

Without further ado, here is my list of Sickle Cell Rules.

Drink water. Water to a sickle cell warrior is the essence of life, health and vitality. Water helps to cleanse your body, flush out dead cells, increases the volume of your blood, thereby reducing the 'clumping' properties of the sickle cells. One cannot have too much water when it comes to sickle cell. I drink 2 liters minimum every day.

Eat healthy foods. Food is the energy source of your body, and you want to make sure your body is performing at it's best capability. Fresh fruits and vegetables are essential, and stay away from fatty foods. My weakness is Curly Fries...not good for me on so many levels, but I find it hard to say no:) Processed foods are high in sodium, and sodium depletes your body's hydration (since it pulls water from the cellular level into the intracellular level, where it is not useful). So cutting down on one's sodium intake is recommended. The fresher the food, the more nutritious...the better for you. Try foods rich in folate like Kale and spinach, as well as thiocynate like beets and carrots. Meats should be lean, but a vegetarian diet is preferred (I learned this the hard way). Eating fatty foods and meat narrows the vasculature of your arteries and veins, thereby making it narrower for the cells to get through, and more prone for a clumping painful traffic jam.

Stay warm. Always have a sweater, jacket or coat with you; especially if you are in a place with unpredictable weather (like Portland). Cold temps leads to vaso-constriction which leads to a crises. The worst crises for me always come when I've been exposed to a cold environment for even something as small as 5 minutes. Hot temps lead to dehydration which can also trigger a crises.

Avoid stress. When you are stressed, your body jacks up on hormones which can lead to a mini crises. Also, you don't take care of yourself when you are stressed, and this can compromise your immune system etc.

Avoid infections. Infections can be the harbinger of worse things. A simple cold can turn to an upper respiratory infection or acute chest syndrome...all complications that sickle cell warriors want to avoid at all costs. So if you see someone coughing, or sneezing please practice good hygiene and avoid sucking face with said person. I once caught the flu from my fiance that led me to the hospital for 2 weeks. He was fine 3 days after he had it.

Travel smart. Flying, diving, road trips etc. all must be done with a degree of caution and understanding of your body. Drink, stretch, pre-medicate and you should get there safely and without pain.

Rest! Sometimes, I ward off a crises just by drinking, taking some meds, and going to sleep. A solid rest will rejuvenate your body, give you strength, and even ease the pain away while asleep. I don't know the etiology of this, but for mini-crises, nothing works for me better than sleep.

Listen to your body. Sleep when it tells you to sleep. Remember, pain does not always have to be a portent of doom, but just a friendly reminder from your body that you are pushing it too hard and need to slow it down. You know your body best, so treat her/him well.

Go to the doctor. I know that many of us (myself included), abhor doctor's visits.  But this is a necessary evil, to update your immunizations and vaccinations, get your lab work drawn and stock up on your meds. Also, the doctor has your medical history, and a good doc knows how to pre-screen you for complications before they arise.

That's all I can think of right now. What are your Sickle Cell rules?

Monday, March 15, 2010

SC Treatment Clinic Opens in Chicago

I love hearing about every new sickle cell clinic that opens. It means that the sickle cell warriors in these locations no longer have to go through the stress of the ER, but can be treated more quickly with care and compassion.
Now both patients of the Sickle Cell Center at the University of Illinois at Chicago have an alternative to the ER: the university's new Sickle Cell Acute Care Treatment Center, 1740 W. Taylor St. The major advantage for patients is that they can get immediate and aggressive treatment because doctors and nurses already are familiar with them.
Read the rest of the article HERE.

O'Grady started it, and now so many others have followed. Hopefully, one day there will be a sickle cell clinic close to you.

Tuesday, March 2, 2010

Sickle Cell and Ports, Catheters & IVs

Video blog posting about IVs, ports, and central access catheters