If you’re like me, we often times hear about certain diseases or illnesses but most times we are unaware about the effect these diseases have on the people and their family. Yes, I’m in the healthcare field but believe it or not I don’t know everything about these diseases. I may know the basic but often times I do my research so I can educate myself.
A few weeks ago I had the opportunity to care for a teenage sickle cell patient and it was one of the hardest patient I’ve had to deal with and believe you me I’ve seen A LOT since working in the pediatric ICU. The pain, the many blood transfusions, surgery; the way it affected the family really broke my heart and made me go beyond the call of duty for this patient and their family.
I’ve been pondering on whether or not I should do a post about my experience working with a sickle patient. Growing up and even before then, I can admit I was a bit naive about what sickle cell could do, all I would think is, it’s all about the pain (yes, that’s how naive I was). I dug deeper and was going to do a post educating us all about this disease.
Today is World Sickle Cell Awareness Day and someone I know has been living with Sickle Cell for as long as she can remember so I decided to shine a light on her as she tells us what life is like living with Sickle cell.
Tell me a little about yourself, background, where you’re from etc.
I am Aneka Lee, born to Luther and Cicely Lee. I am the second of five children. I am currently enrolled in the MSc International Business with Law program at the University of Salford Manchester. I am employed by the Government of Antigua and Barbuda. I have HbSS, this is considered the most severe form of the Sickle Cell Anemia disease.
For those of us who aren’t familiar with Sickle Cell, can you briefly explain what it is?
I do not recall my reaction to finding out that I have Sickle Cell. However, my mother oftentimes tells the story of a two year old who was in constant pain, with swollen limbs who could not be comforted. My parents were given my diagnosis at age 2. They then learned that they both carried the Sickle Trait.
At what age did you start understanding your illness, who helped you to understand and what was the process Like?
What is the different between having the sickle cell trait and sickle cell disease?
When someone has a sickle cell trait, it means they inherited one abnormal (sickle cell) gene and one normal gene, as opposed to the two abnormal genes found in sickle cell disease. People with the sickle cell trait rarely exhibit symptoms of a full-blown sickle cell anemia patient. They have a 50% chance of having a child with HbSS (Sickle Cell Anemia).
How has living with Sickle cell affected you positively or negatively in both your personal and professional life?
Friendships and relationships have suffered due to my illness. The sudden emergency room visits, fatigue and my unwillingness to disclose when I am sick leave others feeling neglected.
I have been fortunate enough to find employers who understand the illness and were still willing to give me a chance. However, for every employer willing to take a chance with me, there were five others who would not.
Have you had to follow any specific diet restrictions? If so, explain.
I discovered that I had gallstones in 2009. My doctor at the time suggested that I remove fried chicken from my diet. Oh the horror!! So I decided to convert to vegetarianism.
I have to monitor my sodium intake, as well as, avoid caffeine and alcohol.
What health complications are associated with Sickle cell?
Health complications associated with Sickle Cell Anemia include chronic painful vascular crises, organ failure, fatigue, shortness of breath, headaches, dizziness, strokes, infections, pulmonary hypertension, acute chest syndrome and eye damage.
Tell me more about your charity and what you do to bring awareness to sickle cell in Antigua.
The Sickle Cell Association of Antigua and Barbuda is an advocacy, support group for the citizens of Antigua and Barbuda living with Sickle Cell. The core objective of the organization is to raise awareness and educate the populace while improving the treatment options available to patients with the blood disorder. Thus far the SCAAB has advocated for free new born screening of Sickle Cell. We are currently raising funds to equip the Sickle Cell clinic at the former Holberton Hospital to be the first treatment option for patients in a crisis.
What have you learned on your journey and what advice would you give to younger sickle cell warriors?
I learned that Sickle Cell Anemia and its treatment is not “one size fits all”. While respecting your limitations may reduce the occurrence of crises, we should never use Sickle Cell as a crutch. You are capable of accomplishing anything you set your mind on.
You can do well in school, you may have to work harder on your healthy days. Always stay ahead with your prescribed course readings.
You should exercise, without overly exerting yourself. Not only does exercise relieve stress, which is a trigger of sickle cell crises, getting fit boosts your self-esteem.
What is your biggest takeaway living with Sickle cell, and what is your hope for others living with this disease
My biggest takeaway from living with sickle cell is that your quality of life is commensurate to the strength of your support system. Having a tribe that loves and supports you on both good and bad days is necessary.