Sunday, June 21, 2009

Ability Magazine - Dancing with Sickle Cell

Ability Magazine April/May 2009 issue features my article, "Dancing with Sickle Cell Anemia."

Order a copy of the magazine at You can order a PDF (electronic) copy of the issue for $2.95 or you can have it mailed to you for $6.95. Kristi Yamaguchi is on the cover of the April/May 2009 issue.

This article confirms my mission. I have determined to cry out to the world about living with Sickle Cell Disease. Also, for the sake of patients all over the world, I want to bring more attention to the suffering associated with this disease.
Education and information with Our Voice.

Thursday, June 18, 2009

Sickle Cell and Stroke

I’ll start by saying I’ve had two non-serious strokes and many silent ones. It seemed odd to me that while I was having those strokes, doctors who treated me never wanted to say the word “stroke.”

I had all the symptoms: blurred vision, slurred speech, intense headache, and numbness on face and hands. Doctor’s seeing these symptoms treated me for pain, worked to bring my blood pressure down, and performed ultrasound scans to see if any clots existed, but they never said “You had a stroke.”

Thankfully, I’ve recovered. I also found out that people with blood disorders (like Sickle Cell) are high risk for having strokes. See more information below, get informed and live.

What is a Stroke?

Blood is circulating through your body all the time in arteries and veins. Usually, these blood vessels work fine and there's no problem. A stroke can happen if something keeps the blood from flowing as it should. A person might have a clogged blood vessel, or a blood vessel may have burst, flooding part of the brain with blood. Either way, with a stroke, brain cells die because they don't get the oxygen they need.

A "Mini stroke" or “silent stroke” is not full-blown stoke because the blood flow is only cut off for a short time and they don't cause the same kind of damage right away. These mini strokes are a warning sign that something is wrong and that a real stroke may be on its way.

What Happens During a Stroke?

A stroke usually happens suddenly, and a person having a stroke has several signs:
numbness or weakness on one side of the body
a very bad headache
loss of balance or coordination
trouble talking or understanding what people are saying
trouble seeing

A stroke can cause learning disabilities and/or lasting brain damage, long-term disability, paralysis (an inability to move), or death. Anyone who has even one of these symptoms should get to the hospital right away.

What Are the Risk Factors?

Stroke occurs in all age groups, in both sexes, and in all races in every country. In African Americans, stroke is more common and more deadly--even in young and middle-aged adults. Conditions linked to stroke are:

High Blood Pressure - Treat it.
Cigarette Smoking - Quit.
Heart Disease - Manage it.
Diabetes - Control it.
Physical Inactivity - Just Move.
Poor Diet - Eat healthy foods.
High Cholesterol - Reduce it.
Certain blood disorders - "Sickled" red blood cells are less able to carry oxygen to the body's tissues and organs. They also tend to stick to blood vessel walls, which can block arteries to the brain and cause a stroke.
Alcohol Abuse - Limit it.
Illegal drugs - Don’t use them.

How Does a Person Get Better After Having a Stroke?

Recovering from a stroke can happen quickly or can take a long time. How soon someone gets better depends on how bad the stroke was and how healthy the person was before the stroke. People who have had a stroke may need medicine or surgery. Later, they may need re-habilitation. Treatment for a stroke will depend on what caused it.

Medicine - For a stroke caused by a clogged blood vessel (ischemic), the doctor might give the person medicine that thins the blood and keeps it from clotting too much.

Surgery - Doctors may do surgery to open up a clogged blood vessel to help prevent another stroke later on. If a person has had a hemorrhagic stroke, surgery may be needed to remove blood clots or fix weak blood vessels.

Rehabilitation - Rehabilitation, or rehab, means the person needs to relearn basic things, like walking, talking, writing, or taking care of themselves. They may need speech therapy, physical therapy, or occupational therapy.

How To Prevent Strokes?

Some strokes can be prevented in adults. Stroke-prevention tips are: Don't smoke, Don't drink too much alcohol, Eat healthy and be active. This can help lower cholesterol. Check blood pressure. High blood pressure is a major cause of stroke. Don't ignore problems like heart disease, high cholesterol, or diabetes.

For more information about stroke:

CDC's Heart Disease and Stroke Prevention ( )
Sickle Cell Information Center


Tuesday, June 2, 2009

June 19th - Sickle Cell Disease World Day at UN

The United Nations (UN) celebrates the first annual Sickle Cell Disease World Day at the UN in New York.

I can't help being happy, excited and overjoyed. The United Nations General Assembly approved a Resolution proposed by the delegation from the Republic of Congo Brazzaville and co-sponsored by 24 Member States.

June 19th of each year was established as Sickle Cell World Day at the UN.

This years activities include: Testimony Stand exhibitions by patients' organizations and international organizations, an art exhibition on the disease, panel and round table discussions, a First Ladies and Royal Highnesses meeting, and a gala dinner.

In partnership with UNICEF, the World Health Organization (WHO) and the UN, this Sickle Cell Disease World Day event will bring global awareness to Sickle Cell Disease and its growing public health problem.

If you're in the New York area (or can get there by plane, train or automobile), please get more information and support this worthy event.

For more information: email Sickle Cell Disease International Organization (OILD/SCDIO)

United Nations