Living With Sickle Cell Disease

Living with Sickle Cell Disease

Imagine going through your whole childhood life without ever realizing what you were ailing from! I was born with SCD but I didn’t know until when I was 22 years old. There was this one time, I felt very ill when I experienced my most severe crisis. I was rushed to Nairobi for proper medication. Before this time, it took a persistent friend (who is now my husband) to persuade my parent that my constant headaches, coupled with infections, chest pain, coughing, difficulty breathing, constant tiredness, and inability to do home chores which involved strenuous activities were all signs of the same thing and that I really needed to seek proper medical attention for.


Growing up in the small agricultural town of Kitale, my parent and medical practitioners who used to attend to me never understood exactly what my condition was.

One of the particularly troubling elements of SCD, when it’s not identified, is the lack of proper known and noticeable symptoms before the rapid onset of crisis experiences. For my case, most of the time they would treat me for malaria and other tropical diseases.

It is by the sheer grace of God that I grew to age 22 when the condition was discovered! My childhood was very disturbed because I never understood why I couldn’t play like other kids or do the things everyone else around me was doing. Before this particular day, I had visited various clinics with severe pains in my back and whenever painful episode occurred and the doctors would diagnose me with Malaria or Pneumonia.

It always amazes me how I survived and how long it took the doctors, my parent and siblings to figure out I had Sickle Cell Anaemia.

Statistically, “Sickle cell disease (SCD) is common throughout much of sub-Saharan Africa, affecting up to 3% of births in some parts of the continent. Nevertheless, it remains a low priority for many health ministries.”


When I was 13 years old, I lost my elder sister to what hitherto, everyone thought was a serious bout of malaria but looking back now. I am more than convinced that my sister succumbed to the effects of SCD. Many people living with SCD have lost lives like this without having the smallest of clues. Many of those lives would have been saved if only those people, their families, and the medical practitioners were aware.


When my parents made the decision for me to permanently relocate to Nairobi due to my medical condition and frequent hospital visits. It made it easier for me to access good medical facilities with doctors who fully understood the condition.

When my husband proposed that we get married. Even though he had done the test and I knew he was completely normal (not a SCD carrier) I had many other worries to deal with. Having lived my life in and out of the hospital. I was hesitant to commit into any long-term relationship and bring forth a child. I finally did.


My husband and I have gone to great lengths to understand the condition. I am happy to have his full support both emotionally and financially as I spent a lot on my medication. However, a majority of people living with SCD in Kenya aren’t as lucky as I; they reside in rural areas and live in abject poverty. Many are suffering from conditions they don’t understand, and the few who do, cannot afford the basic medication to manage the condition. The unlucky ones are losing lives every day. I coped with the pain until I got to college. The unpredictable nature of each crisis and the severity of the pain affected my studies. Hardly a week or two went by without taking a day off school.


There are a lot of people suffering from Sickle-cell in Kenya especially in Nairobi, Western, Nyanza and Coast region. After visiting many of them and seeing the conditions they are in, I decided to start a foundation and dedicate my life to helping other sicklers. From the Sickle Cell Support Group Network organized by my organization. We have families who have the majority of children born with the disease dying before the age of 5. Many families have children living with the SCD condition unbeknownst to them. For other families, children who do survive remain vulnerable to painful complications from severe anemia and sickle cell crisis. They also have an increased risk of dying from cardiovascular events and infections.

The only current treatment of SCD which is bone marrow transplant is not available in most developing countries and where it even exists, the cost is very high for most people to afford. JCSCF has a self-care toolkit that will help people understand the type of treatment options available and then make the best possible choices for their health. With early screening, diagnosis, and treatment have allowed people with SCD to live much longer.

September is a Sickle Cell Awareness Month. The Foundation calls attention to sickle cell disease

I’ve realized the significance of people knowing their blood types. We have launched the #wecare campaign through twitter @cscfke under the hashtag #weCare #SicklecellAwarenessMonth which aims to educate the public to participate in blood test, screening, donations & raise awareness for the fight against #SickleCelldisease.

I also encourage potential partners in new relationships who might be carriers to go in for the sickle cell test and take appropriate precautions to prevent innocent children having the disease. This will help to prevent the cycle from happening again.

Through JCSCF my hope and prayers are that I can reach out to many people and educate them about the disease. From prevention, treatment, and management of the disease. It is a journey I believe is going to be long & tough, murky & challenging, costly & scary but as they say, if it doesn’t scare you then it is not Big Enough!

Joanne Chazima, Executive Director, JCSCF

Follow me on: Twitter; @cscfke. Instagram @jcscfoundation