The Sava Wellness community interview for this month we talk with Sarah (she/her) from South Africa. Sarah has a unique perspective on her sickle cell disease because of her lived experiences and because she is a doctor. Read on below to learn about sickle cell disease and Sarah.

Hello Sarah! It is great to talk with you today. Could you please tell us a little about yourself?

I live in South Africa in the Gauteng province. I stay together with my sister. My favourite hobby is baking (if only I had more time). I’ve started getting into knitting and crocheting, we’ll talk more once I’ve made my first blanket. I’m a medical doctor currently doing my second year of internship at Chris Hani Baragwanath Hospital. I am also an advocate for sickle cell disease.

Do you have a diagnosis for your symptoms?

I have sickle cell disease and was officially diagnosed at 6 months of age. I’ve been aware of my medical condition since childhood, but it was only in my early adulthood that I understood the impact this diagnosis had on my life, of which I then learnt to accept this condition.

How has your experiences of the world changed since your symptoms started? 

During the early years of my life, I was discriminated against, particularly by the healthcare system. It was frowned upon and poorly understood how a young child/teenager could present in the ED with so much pain without having any signs of injury. “The crying is surely just for attention”. “Is it really a good idea to give anything stronger than paracetamol?”. My worst experience was being unattended for a solid 10 hours while having a major crisis because the nursing staff didn’t see my condition as urgent. It’s only now as an adult, along with the title Dr, that I’m suddenly treated with more respect and appropriate care. Interesting how the world works. And yes, you might find it odd that I decided to choose a career in the very same system that has let me down countless times. But I believe that through my experiences and role as both patient and doctor, will help me be the voice for the unheard and hence advocate for patients like myself with sickle cell disease.

Which of your symptoms do you find the most debilitating and why? 

I think the symptom that any person with sickle cell will find the most debilitating is an acute pain attack that we refer to as a crisis. A crisis is severe pain due to sickling of red blood cells and lack of oxygen. The pain can be felt in any part of the body. I personally have been in ICU a couple of times because of a major crisis. In that state, I am unable to do anything for myself; I cannot walk, I cannot eat, I struggle to sleep, I cannot even bathe myself. I do however feel, contrary to popular opinion, that the symptom that affects me the most on a daily basis is the chronic fatigue. Apart from my physically taxing job, chronic fatigue does prevent me from doing certain things I wish I could do with ease.

Can you describe what a bad day symptom-wise looks like to you? 

A bad day for me symptom-wise is usually when my blood level starts dropping. I become extremely tired, even walking a short distance is challenging. Another bad day for me is when I go to bed anxious because I just have a feeling I might have a crisis even though I might have slight to no pain at all.

When you have a good symptom day, what do you like to do? 

A good symptom day is usually after I’ve had a blood transfusion. For a couple of days, my energy levels are up. I like to take advantage by either going to the gym or meeting up with friends.

What has been the most helpful for you as you have gone through this journey? 

Definitely the support from family and friends. I definitely could not go through this journey alone as it is just too much for one person to bear. I’m more than grateful for the community around me.

Is there anything you would like people to know about your chronic illness or chronic illness in general?

A big misconception is that sickle cell disease is a rare illness, however, it is actually one of the most common blood-related disorders. The main reason is that it is poorly recognized and is considered a disease found in western or central Africa only. Recent statistics on sickle cell will show that the number of people living with sickle cell disease globally has increased from 5.46 million in 2000 to 7.74 million in 2021. Sickle cell is not a “black man’s disease”. Immigration is one of the main reasons why sickle cell is spreading around the globe, and even though people of colour make up the majority, as long as you have the gene, any race can be affected.

Thank you Sarah! You can find Sarah on Instagram @fight_of_a_lifetime and at Facebook here.