THE SICKLE CELL DISEASE

 

Our spirit and love grow when we spur ourselves to care and be apprehensive about issues that may or may not directly affect us in society. I am a social media enthusiast apart from my blogging passion, I now have the courage to let you know that I have fallen in love with the practice of using Social media to spread awareness about Serious but usually ignored challenges that distress society.

June 19, 2015 is one of those days that will for long count in my life having spent more than three hours with the people who are directly or indirectly touched by the Sickle Cell disease. Having heard about the Uganda American Sickle Cell Rescue Fund (UASCRF) Conference at Hotel Africana, I promised myself to make it to the venue and learn more about this serious but ignored disease. At around 12 O’clock I reached the venue, went through some through but deserved security checks and made my way to the conference hall where the Conference was housed. 

Like the usual case, I expected to find a few people in attendance but to my astonishment, the conference hall was packed to capacity with More than 5000 people. Sickle Cell patients, doctors, nurses, volunteers and many other individuals constituted the congregation that attended the event. Knowing that I had very limited knowledge about this Sickle Cell disease. Quickly I did not hide my ignorance of the issue at hand, I asked one of the volunteers to direct me to one of the organizers who would come to my rescue and educate me about Sickle Cells. I would like to extend my Big Thanks to Miss Bernadette Asio, a Psychologist and Project Officer at the Uganda American Sickle Cell Rescue Fund. 

Now that I am enlightened about the disease, its high time Tugabane (Share) what I was taught that I regard as very important knowledge that you may regard less important today but could be very relevant in the near future. Like one of my mentors, usually says, Don’t Blink because here is the real deal of this matter.

What is Sickle Cell Disease?

Sickle Cell Disease (SCD) is a group of inherited red blood cell disorders.  Healthy red blood cells are round and they move through small blood vessels carrying oxygen to all parts of the body. In SCD the red blood cells become hard and sticky which makes them look like a C-shaped farm tool called a “Sickle.” Sickle cells die early, which causes a constant shortage of red blood cells. These Sickle Cells can get stuck in small blood vessels and block the flow of blood and oxygen. 

What Causes Sickle Cell Disease?

SCD is inherited from parents to the child. A person with SCD is born with it. It’s important to also note that People cannot catch SCD from being around a person who has it.

Most common Health Problems caused by Sickle Cell Disease;

“Pain Episode” or “Crisis”

Sickle Cells do not easily through small blood vessels, can get stuck and clog blood flow. This causes pain that can start suddenly, the pain can be mild or severe and can last for any length of time.

Infections

People with the SCD, especially infants and children, are more likely to experience harmful infections such as Pneumonia, Meningitis, and Hepatitis.

Hand-Foot Syndrome

Swelling in the hands and feet ,often along with a fever is caused by Sickle Cells getting stuck in the blood vessels and blocking the blood from flowing freely through the hands and feet.

Eye Disease

SCD can affect the blood vessels in the eye and lead to long term damage.

Acute Chest Syndrome (ACS)

Blockage of the flow of blood to the lungs can cause acute chest pain syndrome. ACS is similar to Pneumonia and the symptoms include; Chest pain, coughing, difficulty in breathing and Fever. Acute Chest Syndrome can be life threatening and should be treated as early as t is detected. 

Stroke

Sickle Cells can also clog blood flow to the brain and cause a stroke. Strokes can result in lifelong disabilities and learning problems.

Now that we are quite knowledgeable about the Sickle Cell Disease, How is SCD treated is the question that lingered in my mind during the discussion.

How is Sickle Cell Disease Treated?

The goals of treating SCD are to relieve pain, prevent infections, eye damage and strokes. There is no single best treatment for all people with SCD. Treatment options are different for each person depending on the symptoms.  Treatments can include receiving blood transfusions, maintaining a high fluid intake (drinking 8 to 10 glasses of water each day), Receiving IV (intravenous) therapy (fluids into a vein) and medications to help with pain.

Having held the Sickle Cell Conference for three times in three years since 2013, the statistics available to Uganda American Sickle Cell Rescue Fund Uganda Chapter are serious and should worry society if not take serious. On average 49 of the total districts in Uganda have the Sickle Cell Trait and 1 of every seven Ugandans has the Sickle Cell Trait.  If you thought this disease is far away from you, contemplate again! 

From the guests and high dignitaries present at the conference showed huge hope and support from both central government and other sectors in the Country. Just like the saying goes that do not ask what your country can do for you but ask what you can do for your country. The following are some of the ways we can support the fight against the Sickle Cell Disease;

1. To find out whether you or your loved one has the Sickle Cell Disease (SCD) or Sickle Cell Trait (SCT) Blood tests must be done to screen these conditions. Arming yourself with this information is referred to as knowing your Sickle Cell Status. Who should screen, adults who have never screened, newly born babies and it is recommended that Young couples who intend to get married need to screen to fully know the Sickle Cell Status.

2. You can also support the fight against SCD by sponsoring blood drives and through participation in donating blood.

3.  Spread the Sickle Cell awareness campaign about the disease to all those around you so as not to segregate those that are suffering from the disease. This can be achieved through institutions such as schools, Universities, Churches and many other associations educating their members about the Sickle Cell Disease.

4. Those involved in the fight against the disease most especially the Medical Personnel are still very few when you compare the ratio of Sickle Cell Doctors to that of Sickle Cell Disease patients. 

5. We also need to note that for any campaigns to be very effective and wide spread, there needs to be a financing factor. For all those that are in position to give back to society and improve the conditions of those living with the disease are highly welcome. 

As I conclude, I cannot forget to thank the BMK Group of Companies (Uganda), UASCRF (USA) founded by Abdallah and Lukiah Mulumba with well-wishers from both Uganda and United States who have continuously supported the fight against Sickle Cell Disease.

I also wish to express my gratitude to Dr. Bulaimu Muwanga Kibirige (BMK), Dr. Kagwa Lawrence (former director of Mulago Referal Hospital), Prof Christopher Ndugwa (Sickle Cell expert) and many other professionals that unceasingly offer their resources to fight the Sickle Cell Disease. 
For more details,

visit www.uganda-americansickle.org  



By Mwebya Fred 
mwbyfred@gmail.com 

www.twitter.com/Ugaman01